Hari And Her Dustbin Full Of Doctors

Hari And Her Dustbin Full Of Doctors!

2009-04-14T11:48:00.009-07:00

HARI AND HER DUSTBIN FULL OF DOCTORS!

Disclaimers!

2009-04-14T11:48:00.007-07:00

DISCLAIMERS!

Hari would like to apologise to the doctors who thought that she would die in childhood - for not cooperating!

However, she refuses to apologise for her lack of cooperation to those doctors who actually wanted her to die! (They know who they are!)

The contents of this blog are contributed to, and appproved by Hari.

The Background.

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Hari is 24 years old but is extremely small. The hospital documents her last official weight as 21.7 kg. Having outlived the expectations of a variety of doctors she has now been left in a health care 'limbo'.

Her health care quite rightly continued beyond the age of 18 in paediatrics, due to the complexity of her needs and small size. It would have clearly been inappropriate and dangerous, indeed impossible, to transfer her health care to an adult hospital. To do so would have placed Hari at unacceptable risk for a variety of reasons; most of them insurmountable. Risks with anaesthetics, risks with dosage miscalculations, risks in relation to appropriately sized equipment being unavailable in emergencies, and the risks associated with Hari being unable to defend herself in this environment.

Currently Hari is being refused medical care in paediatrics, regardless of the fact that the risks to her in an adult hospital have not, and cannot be addressed. The outcome of this refusal to treat Hari in the event of illness, even in an emergency situation, is that she is effectively being denied appropriate health care. If she becomes ill there is no solution. Paediatrics will refuse to treat her and an adult hospital cannot treat her without unacceptable risks.

This has been the situation since February 2008 -bureaucratic wheels move slowly and are more concerned with their own rules and regulations, than the individual who's needs they are required to address!

However, we are not surprised! Her life has been a litany of mistakes and refusals to diagnose and treat her various health problems. Indeed it was such a refusal to diagnose and treat that resulted in her small stature - but I will keep that particular story for later! So having created the problem in the first place, the health trust refuses to take responsibility for a situation that is a direct result of their actions.

Hari's life, or that part of her life that lies within the NHS, is actually a reflection of how anybody's health care could be dictated by the politics and policies of managers, or indeed by the self-opinionated attitudes and egos of individual doctors. Once such decisions have been made, decisions not based on patient need, it is practically impossible to get the decision maker or any other doctor to put things right.

Hari is Hari- but her story could be yours, your child's, your grandchild's. We all need to be aware that health care provision within the NHS is not always based on patient need.
This blog is not a tirade against doctors in general. ( Although sometimes that would be tempting!) What this blog contains is a factual account of how one individual has been treated (or not!), by a system that allows managers with no medical knowledge and doctors to choose to neglect the needs of a patient due to personal opinion, politics, egotistical power trips and blatant discrimination.

Not all doctors opt to make these despicable choices. There are some good guys in the system - some of them may even get a mention - but then so will the bad guys!

The Current Situation.

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For some time now we have been aware that political infighting and internal politics have been raging, amongst doctors and managers, regarding the cut-off age for treatment at the Royal Hospital for Sick Children Bristol.

Some want a cut-off age of 16.
Some want a cut-off age of 18.
Some want exceptions to the cut-off age, some do not.

We have been told on numerous occasions that there are exceptions to the cut-off age and that Hari is one of them. Now that seems to have been rescinded and Hari appears to have become the victim of the internal politics.

Hari's health care should not be decided by ANYONE'S politics! Plans should be based on what is right for her as an individual; taking account of all her needs including, most importantly, her safety. The health trust has plans for the creation of a Young Adult Ward within the adult hospital and clearly this would be a safer option for Hari than just admitting her to general adult wards. It is incomprehensible that they are trying to transfer her care before this facility is available.

Hari currently has an undiagnosed health problem. Her life would be a lot easier if a diagnosis were made, so that appropriate treatment and/or lifestyle changes could be initiated.

The problem is this: small increases in potassium and sodium in Hari's diet, cause a dramatic reduction in urine output with associated pain levels that can make her life intolerable. However, her creatinine levels appear to be within the normal range. We are currently able to control the symptoms by carefully monitoring her diet, ensuring that potassium and sodium input is kept at a level low enough to avoid pain. However, with no diagnosis we have no official guidance on this and we are simply controlling the symptoms - not treating the cause.

Doctors have refused to investigate and diagnose this problem and employees of the health trust, University Hospitals Bristol NHS Foundation Trust (used to be United Bristol Healthcare Trust, UBHT,), have sought to blame me, referring us to Social Services, alleging that Hari is 'at risk' due to the fact that she does not have pre-prepared nutritional feeds. The truth is that the potassium and sodium levels in these feeds result in the symptoms worsening, which has an appalling effect on her life due to the pain levels involved. The doctors and other trust employees are aware of this but insist that it 'is not possible' and continue their allegations against me.

Keeping the potassium and sodium input at a reduced level has been extremely beneficial to Hari. She is now pain free for the first time in five years; her life has improved dramatically in many ways as a result of this, indeed she appears to have 'got her life back'.

With regard to the lack of diagnosis, Hari's diet and the false allegations against me - I am pleased to announce that there are a lot of people looking very stupid right now - but I'm not one of them!

The Eviction!

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'Big Brother' has got nothing on us!

Hari entered the hospital in January 2008 as a result of a chest infection.

In the A&E department we had the usual fuss about her age. There was clearly some dispute amongst the staff in the hospital about which hospital she should be admitted to. Eventually, after about eight hours in A&E and the attached observation ward, she was admitted to the adolescent ward of Bristol Children's Hospital.

Within a few days it became apparent that there was something going on, something that we were not being kept informed about. There were repeated attempts to offer us 'support' at home - 'support' that we neither wanted or needed - and we found this rather strange. We now know that the underlying plan was to completely discharge Hari from paediatric care; the aforementioned 'support' was being suggested in order to cover their backs should anything go wrong.

As Hari was not eating, due to her illness, a dietician became involved and she recommended pre-prepared nutritional feeds. It was necessary to explain to her and the doctors that the potassium and sodium content of these feeds might cause problems. I also informed them that we had been unable to get any sense out of the GPs on this matter (why are we not surprised!) and, therefore, had no diagnosis. Obviously some nutrition had to be organised but a feed with a slightly lower sodium content was selected.

Hari's sodium levels were low as a result of her chest infection. This is something that has happened before and is known as Syndrome of Inappropriate Antidiuretic Hormone. (SIADH.)

However, it wasn't long before the medical team began alleging that it was due to diet and they insisted that she was changed to a different feed. This change resulted in Hari becoming more unwell, she was clammy, clearly in pain and urine output ceased completely from early morning until the evening. A junior doctor came to the ward to review things and it was agreed to stop the feeds.

Over the weekend Hari improved again and as she was now eating I had no real concerns about her nutrition. (In fact I was pleasantly surprised that she was beginning to eat again so quickly.) I was confident that her oral, nutritional, intake would continue to improve.

However, the problems with the medical team got worse and it was clear that the allegations against me were continuing. I repeatedly asked for advice regarding the undiagnosed problem but no immediate explanation was suggested. Instead of making plans to investigate the problem, the medical team continued with their allegations to the point where Tom Hilliard recorded this in Hari's notes. He also recorded his reluctance to continue her care. He told me on more than one occasion that she should transfer to the adult hospital as the 'legal issues' were different. It seems that the plan was to use the Mental Capacity Act to override my input. The MCA does not actually apply to Hari, as she is not incapacitated under the terms of the act, to try to use it in this way would clearly be an abuse of the act itself.

Imagine the damage that this plan would have done to Hari! They would have used the act to insist on giving her the pre-prepared nutritional feeds that worsen the symptoms and cause her so much pain.

I found the attitude of the medical team to be increasingly upsetting. Tom Hilliard even accused me of not wanting Hari home! They appeared to be more concerned with their false allegations and transferring Hari's care to the adult hospital than with Hari's immediate needs. They didn't seem to notice that Hari's health, including the undiagnosed problem, should be their first concern and that ignoring an obvious medical problem does not demonstrate a patient centred approach.

Did they really want her left in constant pain - with the risk of the undiagnosed problem worsening?

All of this was complicated by the involvement of Judith Armstrong, Modern Matron. (May the saints preserve us from Modern Matrons!!) She seemed to always be involved, not giving us any real information, not improving Hari's care - as is the remit of the Modern Matron, yet contributing greatly to the problems that were arising. She recorded in Hari's notes that I was being obstructive and uncooperative. What is obstructive and uncooperative about asking for an undiagnosed problem to be diagnosed is unexplained!

The notes are something of a mine of information - a sort of 'diary room' for the medics!

I should not be surprised at the malicious tactics that were employed at Hari's expense. I should not be surprised that Hari's health takes second place to politics and policies. We have experienced this type of situation before, but had honestly believed that it was now a thing of the past - obviously not!

Eventually Hari was discharged from the hospital, although we did not feel that she was really well enough for this to happen. Her outpatients appointment was brought forward to the following week.

I had expressed concerns that, once she was discharged, nobody at the hospital would give any consideration to the undiagnosed medical problem. Tom Hilliard assured me that it would be considered at the outpatient appointment the following week - but he and I both know now that he wasn't telling me the truth!

The outpatient appointment was the eviction announcement!

Hari's medical care within paediatrics was brought to an abrupt end and no follow up had been arranged.

The Nurses On Ward 35.

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For some strange reason it has been suggested that we had concerns or problems with the nursing care on the ward.

We do not know how this suggestion originated - it certainly didn't come from us!

The nurses on Ward 35 are wonderful! They are amongst the best we have encountered in 24 years of using the NHS.

We are concerned that they were put in a very difficult situation by the medical team and modern matron. This was extremely unfair on the nurses who did nothing to warrant any complaint from us. They are a dedicated and professional group who deserve better from their colleagues.

The Complaint.

2009-04-14T11:47:00.015-07:00

The obvious way forward after Hari's eviction was to write formal complaint to the health trust.
We considered all the relevant points carefully and submitted our complaint to the Chief Executive of the trust, Graham Rich.

In April 2008 we received his reply.

Now the purpose of most complaints is to bring to the attention of those in charge, the failings of their organisation - in the hope that they will realise their errors and initiate corrective procedures, enabling an improved service to be offered to all.

Well that's the theory anyway!

In practice this is rarely the result.

The response from the health trust was, as expected, based on the 'oh dear - we couldn't possibly have done anything wrong' theme. The major part of the five page response consisted of a synopsis of Hari's more recent medical history, plus a summary of the events surrounding the January admission and eviction. This was littered with inaccuracies - too numerous to mention here! There was no attempt to resolve the issues we had raised but more importantly, there was no offer to arrange investigation and diagnosis of Hari's ongoing health problem.

Noticeably there was further mention of theMental Capacity Act; clearly this act is central to the plan!

Interestingly enough, prior to the Mental Capacity Act coming into force, there seemed to be no real hurry with regards to transferring Hari's care out of paediatrics. We had been led to believe that whilst her endocrine care could transfer to an adult clinic gradually, her inpatient care, when needed, would remain within paediatrics. The Mental Capacity Act 2005 came into force in October 2007 and almost immediately we received an unexpected phone call from a specialist nurse at the children's hospital. She was asking us to view a ward in the adult hospital at the next outpatient appointment, with regard to transferring Hari's inpatient care - how strange is that?

I've said it before and I'll say it again!The Mental Capacity Act does NOT apply to Hari as she does not lack capacity under the terms of the act. Any attempt to use the MCA in regard to Hari is clearly an abuse of the act itself!

The letter, naturally, contained yet another false allegation against me. Graham Rich asserted that I was verbally hostile to the ward staff on the evening of Hari's discharge. I am happy to refute this allegation and cite, in my support, an entry in Hari's notes, written by a nurse, which confirms that I was joking with her!

There is also reference to me being 'unable to accept the Acute Team's management plan or the advice of the Paediatric Dieticians.

'Now then - what part of 'the nutritional feeds result in the worsening of symptoms and pain' did he not understand?

Pity the poor dieticians - without a diagnosis for this problem they cannot be expected to advise accurately; the information available to them prevents them from making appropriate recommendations.

Don't pity the acute team! They were the ones refusing to investigate and diagnose the problem. So they were the ones preventing the dieticians from obtaining the relevant information. Relevant information which they needed in order to advise accurately and appropriately - taking account of ALL Hari's needs.

So there had been no real attempt, in the response, to resolve any of the issues; Hari remained without appropriate, adequate or safe health care and she still had no prospect of a diagnosis.
Of course we could have asked for a meeting or a further written response but after considering our options carefully, we realised that the only sensible way forward was to refer the complaint on to the Healthcare Commission.

PLEASE USE THE SIDE BAR (BLOG CONTENTS) TO SEE POSTS BEYOND THIS PAGE.

Referring The Complaint To The Healthcare Commission.

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The complaint was referred to the Healthcare Commission in April 2008, including supporting documents of some copies from Hari's notes. The complaint was assigned to Helen Wilson as a case manager.

During early May 2008, Helen and I had a lengthy telephone conversation. Helen was helpful and considerate throughout the call. We discussed the options available and as Helen was keen that the matter be quickly resolved, in order to facilitate diagnosis, she suggested that the complaint be referred back to the health trust for local resolution. Helen explained to me that she felt the health trust had not done enough to resolve our concerns and that they should be asked to do more. She also explained that, if local resolution was unsuccessful, the Healthcare Commission would be happy to take the case back on.

I was concerned that an attempt at local resolution would be unlikely to achieve anything and would simply serve as a delay, if nothing was achieved. However, whilst I didn't expect that the health trust would actually resolve all the issues immediately, I did hope that they might, at least, agree to investigate and diagnose Hari's undiagnosed problem. For this reason we agreed to Helen's proposal.

Helen contacted the health trust, although there was short delay as initially she sent the documents to the wrong trust and they had to be forwarded on to University Hospitals Bristol NHS Foundation Trust.

We waited patiently for the trust to contact us.

As Hari is still being allowed to attend her physiotherapy sessions at the Children's Hospital, an assistant divisional manager, Michele Narey, came to the department during an appointment to speak to us regarding a proposed meeting. I stressed to her that we were keen for a diagnosis to be made.

Again we waited patiently.

Eventually we got fed up with waiting. The delays in every process were delaying the opportunities for diagnosis; so I telephoned Michele's office in order to ascertain when the proposed meeting might take place. A date was agreed and I was informed that those to be present at the meeting would be:

Michele Narey, Assistant Divisional Manager.
Geraldine Johnston, Divisional Manager.
Liz Crowne, Endocrine Consultant.
Anne Miller, Senior Nurse at the Children's Hospital.

We still didn't expect too much from the meeting but in order to try and resolve the issues, and organise investigations and diagnosis, we were keen that the meeting should go ahead.

The Meeting Begins.

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The meeting took place on June 19th 2008 at Bristol Children's Hospital.

The first instance of deceit was apparent as soon as we arrived. Those expected to be present, according to the information we had been given, were Michele Narey, Geraldine Johnston, Liz Crowne and Ann Miller. But there she was - Judith Armstrong, Modern Matron, bustling around and putting the waste paper bin in its place - as is the remit of the Modern Matron!

Now I didn't want to cause a fuss but we had not, so far, had any reason to be impressed with Judith Armstrong and I was concerned that her presence would be counter-productive. So I quietly told Michele Narey that I didn't want Judith Armstrong there are Judith Armstrong was quietly told that she 'wouldn't be needed'.

There was a woman in the room who we did not know and I initially assumed that she was Ann Miller, the senior nurse from the Children's Hospital. However, Ann Millar was not there and this woman was introduced as Anne Berry, lead for vulnerable adults in the adult hospital.

We had heard of Anne Berry. She had recently requested to meet with us but as this meeting was pending we had suggested, quite reasonably, that she wait until after this meeting in order to avoid confusing matters.

I pointed out that she was not supposed to be there but felt pressured into agreeing to her remaining as an observer. It soon transpired that for an observer she had an awful lot to say for herself!

The Meeting Continues - And Ends!

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Geraldine Johnston began by announcing that she would halt the meeting if no progress were made.

The meeting had been arranged in order to resolve the issues which we had raised in our complaint. However the entire meeting was hijacked for the purpose of transferring Hari's care to the adult hospital. None of the ideas they proposed for Hari's care in that environment were convincing. It is still clear that the risks to Hari, in that environment, cannot be overcome.
I attempted to move the meeting forward, in order to discuss the issue of the undiagnosed problem but the discussion was immediately brought back to the transfer of care. It seems that this very real need for diagnosis was not on their agenda and nor were any of the remaining issues of the complaint.

There was, however, one other item on the agenda.

That item consisted of the threat of Social Services and Adult Protection, if we did not agree to their demands.

We found Anne Berry's attitude on this subject to be intimidating and bullying.

She insisted that she would have to involve the Adult Protection team, whilst claiming that she had asked them to 'hold off' for a week until after this meeting.

'Hold off' from what?

She asked ridiculous questions in accusing tones, like "Who looks after her when you're asleep?"

AHA! So now I'm not allowed to sleep!

Obviously my need to sleep occasionally constitutes deliberate neglect!

She did say that I was the best person to look after Hari - but added in a completely unacceptable tone; "For the moment."

How's that for a veiled threat?

She also claimed that the Healthcare Commission had asked her to refer us to Social Services /Adult Protection. (This claim was repeated in the letter I subsequently received from Geraldine Johnston. )

She also claimed that she was only aware of Hari's existence as the Healthcare Commission had alerted her to the matter. However, entries in Hari's notes confirm that Anne Berry knew about Hari as early as January 31st 2008 and received further correspondence about Hari in April 2008. So these entries prove this claim to be untrue as Anne Berry was clearly aware of Hari's existence before our complaint was sent to the Healthcare Commission.

So, as an 'observer', Anne Berry proved to be quite vociferous; constantly interrupting and at times preventing me from speaking.

More on Anne Berry later!

The meeting was brought to an abrupt halt by Geraldine Johnston.

I was explaining to Liz Crowne that nobody was listening to our concerns about the undiagnosed health problem. I pointed out that, in the past, we had experienced similar problems. I reminded her that we had been forced to wait fourteen years for a diagnosis of Hari's lack of growth, stressing that I had always insisted that there must be a medical reason but that nobody had been prepared to listen.

At this point Geraldine Johnston interrupted and halted the meeting.

I am not entirely sure why she did this.

Was it because, as divisional manager, she found the continued refusal to diagnose the undiagnosed embarrassing?
Was it because what I was saying was too accurate?
Was it because she wanted to ignore the fact that the health trust is directly responsible for the late diagnosis of Hari's lack of growth, and its subsequent effects?

Whatever the answer, Geraldine Johnston had halted the meeting and there was no opportunity for further discussion.

More About Anne Berry!

2009-04-14T11:47:00.007-07:00

I promised you more about Anne Berry!

Anne Berry claimed that the Healthcare Commission (who are supposed to help us resolve our complaint) had requested that she refer us to Adult Protection.

She made this claim at the meeting on June 19th 2008. I was about to point out that the Healthcare Commission would be happy to take the case back on if it wasn't resolved locally; I got as far as "The Healthcare Commission..." when Anne Berry interrupted, preventing me from continuing, announcing that the Healthcare Commission had asked her to refer us to Adult Protection.

I'm a little confused about this claim.

I have copies of some internal e-mails between staff at the Healthcare Commission, one of which clearly states:
'...we are not in a position to advise on what action the trust's safeguarding lead should take, as this is outside both our remit and expertise.'

The e-mail is dated May 21st 2008.

As a result of this claim I telephoned the Healthcare Commission and eventually spoke to a manager by the name of Andy Lang. Andy assured me that the Healthcare Commission had not asked Anne Berry to make such a referral.

So it seems that SOMEBODY isn't telling the truth.

CURIOUSER AND CURIOUSER!

What Anne Berry had actually done, before the meeting, was to write to our GP on June 12th 2008, asking them to refer us to Adult Protection - specifically requesting an adult protection review. It seems that her concerns regarding Hari's safety include the fact that I am sometimes selfish enough to sleep and the fact that I do not give Hari the pre-prepared nutritional feeds.

Now these are the same feeds that worsen the symptoms of Hari's undiagnosed problem and cause her pain - but Anne Berry neglected to mention this fact in her letter!

Of course one of the GPs was actually fool enough to make the referral!

John Reid recorded in Hari's notes on June 24th 2008 that he had made the referral to Social Services, alleging that Hari was a vulnerable adult not attending appointments.

WHAT APPOINTMENTS?

Hari had no appointments to attend!

Remember the facts - she had been discharged from paediatrics and no follow up had been arranged!

More on mysterious appointments later!

So, without even bothering to check out the facts and without even having the decency to pick up the phone and ask us what was going on, John Reid made a referral to Adult Protection based on fabrications and deliberate inaccuracies.

So it seems that Anne Berry had successfully manipulated somebody else into making the referral that she knew was unjustified.

That's her back covered then - NOT!

Even more on Anne Berry at a later point!

The Letter From Geraldine Johnston.

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At the beginning of the meeting on June 19th 2008 I was told by Geraldine Johnston that I would receive a copy of the notes being taken - this never happened. What I did receive was a letter from Geraldine Johnston which summarised her stance on the meeting and some of the issues involved in the original complaint.

Her stance simply reiterated her policy on some of the issues which had necessitated the complaint in the first place, whilst failing to address other issues at all.

Further deceit emerged in the letter due to her claim that '...general wards do not have mixed sex gender...'.

This is contrary to what we had witnessed when we were taken to see the ward that Hari 'would be admitted to'. Although there appeared to be separate bays for male and female, the ward was very definitely mixed sex.

With regard to the undiagnosed problem and the lack of investigation, Geraldine Johnston claimed in her letter that I did not want Tom Hilliard or Judith Armstrong present to '...discuss these issues further.'.

The fact that we did not want Tom Hilliard of Judith Armstrong present was not, in any way, a reason to prevent discussion of these issues. Their presence was not necessary in order to discuss the fact that an undiagnosed problem exists and that it should be investigated and diagnosed.

Prior to the meeting I had stressed to Michele Narey that this was the main issue. During the meeting my attempts to instigate discussion on this were obstructed, preventing any in depth consideration of the issue.

The letter also states that this could be assessed under the adult endocrine team. There seems to be a blinkered emphasis on this issue belonging to 'adult endocrine' - which is strange for something which may not actually be endocrine in origin.

More on the endocrine link later!

The Complaint Goes Back To The Healthcare Commission.

2009-04-14T11:47:00.003-07:00

Following the meeting on June19th 2008 and the subsequent letter from Geraldine Johnston, we returned the complaint to the Healthcare Commission.

Further points from the meeting and the letter from Geraldine Johnston were raised and highlighted.

So - after cooperating with the Healthcare Commission request to attempt local resolution, we were back to square one.

The complaint had been referred back to the trust for local resolution on May 7th 2008. So in over two months the matter had moved no further forward. That time would have been better utilised in investigating and diagnosing the undiagnosed!

Hari was still without appropriate or safe health care beyond the limited scope of the GPs.
Hari still had no diagnosis for a very real medical condition. A condition that can adversely effect her life and could be degenerating.
Other issues from the original complaint had still not been addressed.

Maybe 'square one' is not the right phrase.

Further events, such as Social Services and Adult Protection being used as a threat, had occurred; making the whole situation worse. This reflected the fact that the trust's obsession with apportioning blame to me was being given a higher priority than their duty to address Hari's medical needs.

The SecretPlan!

2009-04-14T11:47:00.001-07:00

During all this wasted time it seemed that Hari had been upsetting the 'powers that be', by her refusal to present them with an emergency with regard to her health.

Their immediate plan had been to await an emergency situation and abuse that, as a means to enable them to railroad her inpatient care into the adult hospital.

In fact, Judith Armstrong, Modern Matron, wrote in her letter to Anne Berry on May 8th, 2008:

'The most likely forthcoming episode would involve an emergency admission, under the orthopaedic team to address hip pain. I will write a brief letter to Dr. Goldsworthy, Consultant Paediatrician, A&E, BRHC; the Outreach Team, BRHC; and Ward 35 nursing staff, reiterating that, should Hari present to A&E, BRHC, she must immediately be transferred to A&E, BRI, for assessment and intervention within adult services.'

So that was clearly the plan. They were waiting for an emergency and would then refuse to see or treat Hari at the Children's Hospital; they would railroad her into the adult hospital and ignore all the associated risks. This was hardly a professional attitude; indeed it was a shocking attitude from a Modern Matron who's remit is to improve patient care!

However, we were not entirely surprised at this attitude. There had been an earlier instance, on the day that Hari was being discharged as an inpatient from the Children's Hospital, which displayed the same unprofessional attitude.

There is a myth in the NHS that the curtains around the beds are soundproof - they are NOT!

The curtains were around Hari's bed and we could hear the discussion about the transfer of her care to the adult hospital taking place near the nurses station. (Everybody else within range could hear it aswell!)

We clearly heard an irate announcement:

'Just get her notes together and push her over there NOW!'

And yes - we DO know who the voice belonged to!

Why The Hip Failed To Provide The Required Emergency.

2009-04-14T11:46:00.013-07:00

For some years now Hari's hip pain has been controlled by steroid injections. These generally last for about six months and are repeated, under anaesthetic at the Children's Hospital, when necessary.

We have been aware, for some time, that the pain associated with urinary problems, interferes with the length of time that the hip injections succeed for.

When Hari experiences pain from the urinary problems; pain that has not been controlled effectively due to lack of diagnosis and contra-indications with some painkillers, she naturally tries to make herself more comfortable in order to alleviate this pain. Unfortunately this results in her sitting position becoming unsuitable for her hip and the hip pain then returns earlier than expected - often moving rapidly from no hip pain to severe hip pain in a very short stretch of time.

During 2007 the times between injections being needed were reduced and interestingly, this coincided with the recommended use of a pre-prepared nutritional feed which had a higher level of sodium than the one which had previously been used.

Since stopping the use of pre-prepared nutritional feeds and paying close attention to Hari's sodium and potassium intake, in order to deal with the urinary problems and associated pain, we have realised an unexpected advantage.

The Hip pain has failed to return!

Obviously, as Hari has been free from the pain associated with the urinary problems, her self positioning has altered and this has been beneficial to the hip problem. Hari's hip was last injected in August 2007 and she has now gone over fourteen months with no hip pain whatsoever.

So - the emergency admission that Judith Armstrong, Modern Matron, had been relying on, simply failed to materialise.

What a shame!

Waiting Patiently!

2009-04-14T11:46:00.011-07:00

Having referred the complaint back to the Healthcare Commission, we prepared to wait patiently for the processes involved to occur.

First we received the standard acknowledgement, which stated that we could expect to hear from the allotted case manager within 15 days. This acknowledgement was sent to us on July 28th 2008.

We waited patiently.

Eventually we heard from the allotted case manager, Ian Howe, and he told me that he would contact the health trust to ask for Hari's notes and the complaint file.

We waited patiently again.

Whilst we were waiting, some strange events occurred.

On August 28th 2008, Ian Howe wrote to me regarding the request for Hari's notes and the complaint file. The Information Access Team at the Healthcare Commission had decreed that, as Hari could not physically pick up a pen and sign her name, he must obtain her verbal agreement over the phone.

I telephoned Ian Howe and explained that Hari does not talk but offered him the opportunity to come and meet her, so that he could ascertain her response face to face. He didn't think that the Healthcare Commission would fund his travel costs! We discussed the fact that not requesting the notes would contravene the Disability Discrimination Act, as Hari's disability should not prevent her from having her complaint heard. Ian decided that he would go ahead and request the notes and complaint file.

So - a whole month after receipt of our complaint had been acknowledged by the Healthcare Commission, the letter requesting the notes and complaint file was only just about to be sent to the trust.

How fortunate that we were waiting patently - despite Hari's need for diagnosis!

The Mystery Of The Secret Appointment!

2009-04-14T11:46:00.009-07:00

Another strange event began to unfold.

Whilst we were still waiting patiently I had also been dealing with some problems relating to Hari's feeding tubes.

Somebody, somewhere, had pushed some paper around a desk and decreed that everyone using NG tubes of the type we were using should change to a different type. We tried a few different makes before finding one that seemed suitable and throughout this process I had a few telephone conversations with Geraint - a dietician involved in ordering the tubes.

During one of these conversations Geraint commented that we had missed a hospital appointment and I assured him that Hari had no hospital appointments. However, he was adamant that we had missed an appointment and rifled through Hari's notes to locate a letter referring to this. He then told us that Hari had not attended an appointment on August 13th 2008.

This was the first that we had heard of this appointment!

Curiouser and Curiouser!

No letter had been sent to our GP surgery regarding the missed appointment - sending such a letter is standard practice.

Curiouser and Curiouser!

No replacement appointment, or letter telling us to seek a new referral, had been sent to us.

Curiouser and Curiouser!

Now then - John Reid, GP, had made the referral to Social Services/Adult Protection, alleging that Hari was not attending appointments, on June 24th 2008. At this point she definitely had no appointments.

The appointment that we were supposed to have missed was on August 13th 2008, nearly two months AFTER the Social Services/Adult Protection referral had been made!

Curiouser and Curiouser!

Is John Reid, GP, psychic - do you think?

Interestingly, the secret appointment was also AFTER I had pointed out to the Healthcare Commission that the referral had been made on the grounds of not attending appointments when no appointments had been given - and that this situation was not of our making!

Curiouser and Curiouser!

It seems to me that as certain people actually had no justifiable reason to instigate a Safeguarding Meeting/Adult Protection Review, they had found it necessary to invent a reason that might seem plausible enough to support their malicious actions.

Easy solution - book an appointment but don't tell the patient or carer about it.

HEY PRESTO! Vulnerable adult not attending appointments!

Not so curious now!

More about not telling the patient and carer about things later!

Another Delay In The Whole Process.

2009-04-14T11:46:00.007-07:00

There we were waiting patiently, for the notes and complaint file to be sent to the Healthcare Commission, when we came home one day to find a strange message on the answerphone.

The Assistant Chief Nurse at the adult hospital, Sue Jones, happily announced that she remembered us from when she had worked at the Children's Hospital. (We have no idea who she is!) She claimed that they had always been pleased to see us coming in because of my sense of humour.

Now that is extremely strange!

Any of my friends will tell you that my sense of humour is seriously warped - many of them can give testament to the fact that they have been on the receiving end of some very strange practical jokes!

The message continued. According to Sue Jones the Healthcare Commission had asked for another attempt at local resolution.

Now excuse me - but hadn't we been there before?

Hadn't it failed?

Hadn't the previous attempt at local resolution wasted enough time and caused a protracted delay?

I telephoned Ian Howe, reached his voicemail and left a message.

Ian called me back and his explanation was that he hadn't asked for further local resolution. His explanation was that UBHT/University Hospital Bristol NHS Foundation Trust had misunderstood his request for the notes and complaint file. We did discuss the possibility of further local resolution but concluded that the independent review by the Healthcare Commission should go ahead.

I left the matter with Ian and so did not return Sue Jones's call.

A few days later Sue Jones left another message on the answerphone, in which she stated that she would write to me.

Sue Jones's letter was written on October 9th 2008, still claiming that the plan was for local resolution.

Her proposals were twofold.

Firstly, she suggested another meeting that would include Anne Berry.

Now we very definitely had been here before - and it had failed!

In fact, we had been so unimpressed with, and offended by, Anne Berry's attitude and actions that we would not contemplate meeting her again.

Secondly, Sue Jones suggested that Hari should have an appointment with Stafford Lightman, endocrine consultant at the adult hospital, in order to get his opinion on the undiagnosed problem. She stressed that such an appointment would not mean a transfer of care.

Hari and I were both concerned with a further aspect of the letter. Sue Jones stated that she had '...corporate responsibility for patients with learning disabilities.' and the proposed meeting was to include a '...Learning Disabilities Specialist Nurse.'

Hari does NOT have learning disabilities!

But there they were, pigeonholing Hari into a learning disability category, simply because she has a physical disability which results in her using a wheelchair. This type of discrimination is unacceptable from what is supposed to be a professional organisation. With this attitude there is little hope that they will be able to consider the issues appropriately or adequately.

Ian Howe had outlined to me, the agenda for the proposed meeting. The focus, yet again, was to be transfer of care. There appeared to be no plan to discuss health care that was safe and appropriate for Hari.

We responded to Sue Jones's letter, explaining all our concerns and outlining two proposals, that we know are both reasonable and appropriate for Hari.

The two proposals that we put forward were that firstly, Hari should be seen as an outpatient at the Children's Hospital in order to facilitate diagnosis of the undiagnosed and secondly, that Hari's inpatient care should be returned to the Children's Hospital - with this being reconsidered when the young adult ward is opened. This response was copied to Ian Howe at the Healthcare Commission, reiterating our previous discussion that the independent review should go ahead if these proposals were refused.

This strange event had begun to unfold at a particularly inconvenient time for us. Sue Jones' letter had arrived just as the Cheltenham festival of literature was beginning.

The festival is our 'annual pilgrimage' - we spend ten days whizzing back and forth to Cheltenham, relaxing and enjoying the numerous events - and Hari also hits the shops! After all the hassle of the previous nine months we were desperately looking forward to this break.

So over the first weekend of the festival, when all the other festival goers were laid on the grass in the gardens, relaxing and soaking up the sun between events, we were sat amongst them composing the response to Sue Jones's letter.

On the Monday morning, when we should have been taking life easy, we found ourselves driving to Bristol to hand deliver the response as we felt it needed to arrive quickly and Sue Jones had not included her e-mail address.

We couldn't enjoy the festival as much as we should have done. The stress and worry of the whole situation prevented us from relaxing and enjoying any of the events as much as we usually would.

So much for our desperately needed break!

Our Proposals Are Rejected By The Health Trust.

2009-04-14T11:46:00.005-07:00

On October 27th 2008 Sue Jones wrote to me again.

The letter stated: '...we are not likely to be able to progress local resolution of your complaint.'
So she was rejecting the reasonable and appropriate proposals that we had made. We cannot understand why. It is clearly obvious that our proposals are the safest and most appropriate plan for Hari's immediate health care needs.

However, we were not surprised by the content of the letter - Ian Howe had already told me that this rejection was the case.

Sue Jones suggested in her letter that: '...the best course of action is now to pursue the independent review.'
Well - we had already made that particular decision!

The original complaint was referred to the Healthcare Commission in April 2008 - and it had taken over six months to get to the point where the independent review would actually go ahead.

I had mentioned in the original complaint that the matter was urgent!

What also concerns us about the content of the letter is that Sue Jones stated that she had: '...addressed the concerns you have expressed with Anne Berry, Discharge Manager and Ian Hough [sic] from the Healthcare Commission.'

Now then - ignore Anne Berry's title of 'Discharge Manager' - she's a nurse.

Did Sue Jones not address our proposals with any real managers?
Did Sue Jones not address our proposals with Michele Narey or Geraldine Johnston?
Did Sue Jones not address our proposals with the Medical Director or the Chief Executive?

More on Sue Jones's letter later!

Secrets Revealed!

2009-04-14T11:46:00.003-07:00

When we had re-submitted the complaint to the Healthcare Commission, after the first attempt at local resolution, we had requested that we were sent copies of communications between the Healthcare Commission and Anne Berry/other agencies.

We had made this request due to concerns regarding Anne Berry's claim that the Healthcare Commission had requested that we were referred to Social Services/Adult Protection.

The Healthcare Commission decided that this should be treated as a request under the Freedom of Information Act and sent it to their Information Access Department.

Initially the Information Access Department denied that there had been any correspondence between the Healthcare Commission and Anne Berry/other agencies '...in respect of your complaint concerning the trust.'

As a result of this denial we had to use the appeals procedure, stressing that we already knew that communication had occurred and reiterating that our request referred not to the complaint itself but to the Adult Protection issues.

On October 30th 2008, the Information Access Department at the Healthcare Commission sent us some copies of internal e-mails and a 'cause for concern sheet'. The e-mails had been copied to Anne Berry.

The e-mails confirm that there had been discussion with Anne Berry, regarding adult protection issues.

However, one e-mail states:

'...I have explained to Anne that you will probably be keen to separate the complaint from the trust's healthcare management, so as to maintain the Commission's impartiality in dealing with the complaint.' The e-mail goes on to suggest that the recipient should have a phone conversation with Anne Berry.

Two days later another e-mail states: '...we are not in a position to advise on what action the trust's safeguarding lead should take, as this is outside both our remit and expertise.'

So - could we safely assume that the Healthcare Commission was completely impartial and had not asked Anne Berry to make a referral to Social Services/Adult Protection?

There was no inclusion in the information of details of the phone calls that had taken place, although we had asked for this information.

That leaves the 'Cause For Concern Sheet'.

On May 1st 2008, prior to the internal e-mails which we had been sent copies of, a 'Cause For Concern Sheet' had been filled out by Clare Gasher, Complaints Case Manager.

Apparently taking her information from the documents available to her, Clare Gasher seems to have ignored the content of our complaint; giving regard only to the contents of Graham Rich's response to our original complaint to UBHT/University Hospitals Bristol NHS Foundation Trust.

Throughout the 'Cause For Concern Sheet' she refers repeatedly to all fault of the situation being mine. She falsely states, more than once, that I am the one refusing Hari medical care! She repeats false allegations from the trust regarding low calorie and sodium intake and the nutritional feeds, whilst making no mention of the problems and pain that these feeds cause. In fact NOWHERE in this sheet does Clare Gasher mention the need for diagnosis, that I have repeatedly requested but which has been repeatedly refused by the trust.

Again the inaccuracy that attributes learning disabilities to Hari is included.

I am informed that this form was completed following the occurrence of an enquiry from the Healthcare Commission to the trust, in order to ascertain whether or not a referral to Adult Services had been made.

Two serious points are immediately apparent.

Firstly, that Clare Gasher, a Complaints Case Manager at the Healthcare Commission, has seen fit to fill out a 'Cause For Concern Sheet' without accurately ascertaining the true facts of the matter and whilst ignoring Hari's need for diagnosis of the undiagnosed.

Secondly, that as early as May 2008, Clare Gasher, a Complaints Case Manager, had already reached her conclusions on all the issues involved. She had done this within two weeks of the complaint arriving at the Healthcare Commission, without any further investigation, without seeing Hari's notes, without seeing the complaint file held by the trust and without seeking independent medical advice.

So much for impartiality!!!

We are obviously concerned that the existence of this sheet and its contents, will prevent our complaint from being reviewed in a fair and independent manner. We are also concerned that decisions had been made as far back as May 2008 and that all subsequent events and procedures have been no more than a time wasting pretence.

We Ask Some Questions - But Get No Answers So Far.

2009-04-14T11:46:00.001-07:00

The letter containing the 'cause for concern sheet' arrived on October 31st 2008.

We were horrified by the inaccuracies in this composition and realised that we had no reason whatsoever to trust the Healthcare Commission. This organisation is supposed to investigate problems within the NHS and recommend steps to be taken for resolution and improvement.

Their website states:'

We check the quality and safety of healthcare provided by the NHS and independent organisations, promoting improvements for patients.'

They are clearly not supposed to cause further problems!

I telephoned the main number for the Healthcare Commission and asked who I needed to speak to regarding the 'cause for concern sheet' as, at this point, we were seriously considering taking legal action.

I was put through to a manager, Loraine Darcy, who seemed unable to answer my questions but she promised to call me back the same day. She did not call me back. (Although she now claims that she did try to call me back but must have miss-dialled!)

On November 4th 2008, Ian Howe telephoned me saying that Loraine Darcy had told him that I had called wanting to know what was going on in relation to the independent review. I explained to him that this had not been the reason for my call and outlined our concerns regarding the 'cause for concern sheet'. Ian said that he would get Loraine Darcy to call me straight back.

Instead, it was Ian who called me back. He explained that Loraine Darcy was about to go into a meeting and asked if I would be home the next day for her to call me then.

Late morning on November 5th 2008, she finally called me. Firstly she demanded to know whether or not we had begun any legal action. I informed her that we had not done so -yet!

Obviously, the decision to take legal action is ours and can be made at any point. The fact that we have not yet decided to go ahead with this, does not prevent us from doing so at any point during or after the review process.

I put some questions to her and insisted that we should have the answers in writing. She confirmed that she would do this.

To date, November 16th 2008, we have not received her letter.We are still waiting - but not too patiently!

Side Effects!

2009-04-14T11:45:00.015-07:00

Side effects are endemic in the NHS. They prescribe one medication to treat a problem and that medication risks causing further problems as its active ingredients act on other parts of the body too. Another medication is prescribed to deal with the side effects, that medication, in its turn, can cause further side effects, and so on!

Side effects are clearly not limited to medications. Everything that is done within the NHS risks adverse effects. Within this whole farce the adverse effects of their actions have been far reaching.

Obviously the main effect is that Hari has no access to safe and appropriate health care, beyond the limited scope of the GPs' and in all honesty they are not a great deal of use to her apart from repeat prescriptions.

Also, it is obvious that there is still no diagnosis for the undiagnosed. Their refusal to investigate and diagnose puts Hari at risk of harm, as without a diagnosis we cannot be sure that the beneficial dietary changes are sufficient. Her health is being deliberately neglected by UBHT/ University Hospitals Bristol NHS Foundation Trust - and this is not for the first time!

The stress and worry of all this has adverse effects on both of us in various ways. The people who are supposed to be supportive have actually caused many problems in our lives. In fact, Richard Harrison, Practice Manager at the GP surgery, on reading the contents of the letter from Anne Berry to the GP, announced angrily: " These people are supposed to support you not cause you all this hassle!"

Official bods seem to put a lot of emphasis on the benefits of respite care. However, we have never been interested in the conventional system of respite - we don't fit their box!

My own means of creating respite has been through study. I decided to add a BSc to my BA and prior to the eruption of this situation, had been thoroughly enjoying working towards this qualification with The Open University. Actually, I'd been doing rather well - having achieved a distinction for the previous year and was ecstatic at the content of this year's courses. I unpacked the experimental equipment when it arrived and was like the proverbial kid in a toy shop; itching to get on with conducting the experiments!

It didn't last long.

The problems caused by UBHT /University Hospitals Bristol NHS Foundation Trust, made it impossible to continue with the work involved. So that was that. My respite had been taken away by the people who are supposed to be supportive.

The further adverse effect of this was financial. The course fees still had to be paid and that money, money which I struggled to afford, was now wasted. Due to the circumstances the University decided to allow me a fee waiver of 50% which was obviously a help - but at a cost to the University. Unfortunately I would never be allowed another fee waiver in relation to Hari's health, so, in any further study, I would risk losing even more money if Hari were to become ill mid course.

Richard Harrison had said something else to me. He had said that the surgery were concerned that I '...should have a life too.' My response was to tell him that I'd had a ****ing life before all this **** had started!

However the adverse effects and risks to both Hari and I being able to have lives was greater than this. We have a list of all the items we would need to take with us if it became necessary to leave home and disappear in a hurry.

If anybody had tried to enforce any actions through Social Services /Adult Protection that would have resulted in Hari being forced to use the pre-prepared nutritional feeds, which cause her so much harm and pain, then we would have packed the essentials and left - leaving no forwarding address. We were prepared to give up everything in order to protect Hari from this NHS lunacy.

Strangers often approach us and ask about Hari. They usually include the comment; ' she must be such hard work.' I generally tell them that the really hard work is the idiots you are forced to deal with in officialdom and the NHS!

This current farce proves my point!

The results of Hari's new diet are hugely beneficial to her. It makes some people look exceedingly stupid! Would they see this benefit and still tell us that the symptoms and effects that I described to them are not possible? Good heavens! The symptoms and effects were witnessed in the hospital by a junior doctor and still they told us it was not possible!

They should be grateful that I have prevented them from causing further harm and pain to Hari. Had they managed to force Hari to continue to be fed these pre-prepared nutritional feeds, especially at the volumes which they had intended, then the harm and pain this would have caused Hari could have been catastrophic - and they would have looked even more stupid than they already do!

During Hari's inpatient admission, their insistence on feeding her these pre-prepared nutritional feeds and their refusal to allow Hari to be fed according to her needs contravened her human rights. It also contravened the Disability Discrimination Act and ignored the trust's Disability Equality Duty.

The adverse effects of their actions seem never ending - that is what happens in a system which allows employees to wield power, unacceptably, over the individual.

Patients Of The Lesser Gods!

2009-04-14T11:45:00.013-07:00

A slight digression.

We all know the way it works. You travel miles to a hospital appointment, wait for an eternity in the waiting area and after all that you don't even breathe the same air as the consultant! You get seen by the registrar (if you're lucky!) then trundle home feeling as if the whole thing was a complete waste of time.

You're probably right!

The lesser gods do exactly what the 'boss' has told them to do, the agenda for the appointment is set in stone and none of your concerns can initiate any deviations from that agenda. The lesser god will report back to the 'boss' and your concerns might be addressed at the next appointment (if you're lucky!) which could be at least six months away.

So the lesser gods simply do what they're told - they usually haven't yet done the day course on decision making!

It's much the same on the wards. The lesser god arrives at your bedside, ready to trot out whatever he/she has been told by the 'boss', then trundles away again without resolving anything. He/she will report back to the 'boss' who may, or may not, issue further instructions.

So when Ben Marsh, lesser god, arrived at Hari's bedside we were aware that his attitude and communications had been decreed from above - but that is no excuse!

There he stood lecturing me about Hari needing to attend the GP surgery on a weekly basis,to be weighed and have blood taken - because 'she needs this' , as if I were some errant schoolchild who needed taking in hand. There was no explanation as to why Hari needed regular weighing and blood tests, just the general indication that somebody needed to check up on how much I was neglecting her.

I wonder if he realised how ridiculous he was making himself look?

Or was the 'boss' responsible for the creation of this impression?

In retrospect the whole scene must have looked hilarious! His two accompanying lesser gods stood, stony faced, obviously trying to disapprove of me and to reinforce his attitude - what are they all doing in medicine? They should be on the stage! Oscar winning performances from all three of them!

That was ten months ago and our GP surgery has never requested that Hari be weighed or have bloods taken.

So obviously this was all very urgent!

More about the weighing and bloods later!

Pity The Poor Dieticians Again!

2009-04-14T11:45:00.011-07:00

I really do feel sorry for them!

During one of my telephone conversations with Geraint about the NG tubes he suddenly decided to quiz me about what Hari eats. Now admittedly I wasn't exactly forthcoming in my response but that is because I had already given them this information - the repeated inquisitions were getting boring!

I am sure that the dieticians would love to give us accurate advice and recommendations with regard to Hari's diet but they are not in a position to do so. As I've said before, they cannot advise responsibly whilst there is no diagnosis for the undiagnosed. They would be required to follow policies which would result in their advice being harmful to Hari. The policies, which take no account of individual need, decree that pre-prepared nutritional feeds must be used. They will not and cannot deviate from these policies without a diagnosis for the undiagnosed - so until the doctors decide to diagnose the dieticians are being prevented from advising accurately and appropriately and will be forced to recommend the pre-prepared nutritional feeds.

Well Hari's doing very well without them thank you!

So this week we received a letter in the post from the dietician's department.

The letter requests my 'permission' for the dieticians to review Hari's nutritional status and feeding equipment needs. Her equipment needs have very recently been ascertained and organised. I have already explained her nutritional status, emphasising that the changes we have made have resulted in her health improving and in Hari being pain free for the first time in five years.

They have even, very kindly, included a tear off slip at the bottom of the letter for me to sign and date. On this slip I should apparently indicate whether or not I agree to such a review.

We wonder exactly who has decided to send this letter - and why.

Hari has decided that she will respond to this letter herself.............just as soon as she manages to stop laughing!

Some Answers Arrive - But Promote More Questions.

2009-04-14T11:45:00.009-07:00

On 21st November 2008 we finally received the written answers to the questions that I had asked Loraine Darcy at the Healthcare Commission.

Firstly, I had asked Loraine Darcy to ascertain where Clare Gasher got her information from when she completed the Cause For Concern sheet.

Loraine Darcy's answer is that Clare Gasher decided to '...complete the Cause for Concern form after studying the documentation between yourself and the United Bristol Healthcare Trust (the Trust) which you provided when requesting an independent review.'

So - as I have said before, it seems that Clare Gasher filled in the Cause for Concern form based purely on the response to our original complaint from Graham Rich, Chief Executive at UBHT. In doing so she ignored the full content of our complaint and Hari's need for diagnosis.

Secondly I had asked Loraine Darcy if Anne Berry had been sent a copy of the Cause for Concern form.

Well - I did promise you more about Anne Berry!

Loraine Darcy's answer is that Anne Berry has not been sent a copy of the Cause for Concern form.

So -if this is the case, how had the Healthcare Commission raised concerns with Anne Berry, as she had claimed?

Thirdly, I had asked Loraine Darcy if anyone at the Healthcare Commission had asked Anne Berry to make a referral to Adult Protection.

Loraine Darcy, having discussed this with Anne Berry, confirms that nobody at the Healthcare Commission had asked Anne Berry to make a referral to Adult Protection.

So - when Anne Berry had clearly stated at the meeting, on 19th June 2008, that the Healthcare Commission had asked her to make a referral to Adult Protection she must have been lying!

However, Loraine Darcy goes on to say that Anne Berry says that '...conversations with the Healthcare Commission helped her to focus on the necessity of making a referral to Adult Protection.'
We have been given no further details of these conversations - we will be asking further questions about this!

Finally, I had asked Loraine Darcy how the Healthcare Commission review could be fair and independent in the light of the contents of the Cause for Concern form, completed by Clare Gasher who is employed by the Healthcare Commisssion.

Loraine Darcy has re-worded this question to a statement that reads; 'Considering what has happened so far you have doubts that the independent review process will be fair.'

Loraine Darcy insists that the review process will be fair and independent.

We are not convinced!

Towards the end of the letter Loraine Darcy states: '...the Healthcare Commission does have a responsibility to adhere to safeguarding procedures. However, it was clear to me when we spoke that you have quite understandably found that process distressing and I am sorry for that.'

Now then - Loraine Darcy is 'sorry' for the fact that I found the process distressing.

It seems that she is not sorry for the inaccuracies and false allegations contained within the Cause for Concern form.
It seems that she is not sorry for what staff at the Healthcare Commission have done that caused the 'distress'.

It seems that she is not sorry for the way in which they have done this.

So -her use of the word 'sorry' amounts to nothing and is not an apology.

We do not believe that safeguarding procedures require that complainants/carers are subjected to false allegations being recorded against them, by Healthcare Commission staff, to the detriment of the person on who's behalf they are complaining. If this were the case then such procedures would contravene the Disability Discrimination Act by preventing disabled people from having their complaints considered fairly and independently.

Clearly the way in which the procedures are being applied contravenes the Disability Discrimination Act.

The Missing Link!

2009-04-14T11:45:00.007-07:00

Let's return to the letters from Sue Jones, Assistant Chief Nurse/Head of Nursing at the adult hospital.

In her letter dated October 9th 2008, Sue Jones stated: '...it is important that we have a second opinion regarding your concerns for Har's undiagnosed endocrine problems.'
Well that's was a first - they'd been telling me up to now that the symptoms weren't possible!

Sue Jones also stressed that such an appointment would not mean a transfer of care.

In my response I stated, in relation to this issue:
'The offer of a second endocrine opinion seems rather vague in intention. At this point in time we cannot be sure that the undiagnosed problems are endocrine in origin. (Unless a diagnosis has already been ascertained and deliberately withheld by the trust!) This suggests a limitation on the process should no endocrine cause be found. Clearly this is not in Hari's best interests as the diagnosis must be identified, whatever the origin.'

In her letter dated 27th October 2008, Sue Jones informed me that she had made the appointment for November 5th 2008.

The irony of the date has not escaped us - Fireworks Night indeed!!!!!

Hari did not want to attend this appointment - she felt, as I did, that this was just part of the deceptive process of pushing her health care into the adult hospital. However, after some persuasion from me, including various promises about what could and couldn't happen at the appointment and my assurance that, as Sue Jones had stressed that this was not a transfer of care, we would only be attending to discuss the undiagnosed problem, she agreed to attend.

We also realised that, in the light of the previous false allegation that Hari was a vulnerable adult not attending appointments and the events surrounding the secret appointment in August which nobody had notified us of, this was a hoop which we needed to jump through for our own protection.

A short recap of the missing endocrine link reveals:

1) Tom Hilliard recorded in Hari's notes: '...I strongly feel that this is not an issue that we need to investigate.' and: '...this does not represent a significant medical issue at present and that it can be followed up by endocrine(Dr. Crowne)' He told me that Liz Crowne could consider this problem at Hari's outpatient appointment at the Children's Hospital, which took place less than a week after Hari's discharge from the ward in February 2008. (See 'The eviction')

2) Liz Crowne told me that Stafford Lightman could consider this issue in the adult hospital as fluid balance is his interest within endocrinology.

3) Geraldine Johnston stated in her letter that this issue could be assessed under the adult endocrine team.

So what of the oracle Stafford Lightman?

I quote..."It's not my speciality."

So much for the missing endocrine link!

We are not surprised!

He told us that he knew of no condition related to sodium/potassium intake that would cause pain. His plan, he claims, is to talk to his colleagues to find somebody who will be interested.

Well we've heard that one before!

Are Hari's chances of diagnosis totally dependent on somebody being interested?

Probably!

Nothing new there then!

We will wait for the location of an interested doctor - but not too patiently - as we have no reason to believe that anybody will be interested - after all - nobody else has been interested so far!

A Little Lose End - Or What Do They Pay These People For!

2009-04-14T11:45:00.005-07:00

There's a slight lull in proceedings right now as we wait patiently for a few things to happen.

We're waiting for Loraine Darcy's response to the further questions we have submitted regarding the telephone calls between Anne Berry and the Healthcare Commission.

We're waiting for the independent review by the Healthcare Commission to happen!

The copies of Hari's notes and the complaint file should have been sent to the Healthcare Commission, by UBHT/University Hospitals Bristol NHS Foundation Trust, by last Friday. Nobody has contacted us to tell us whether or not these papers have actually arrived.

We're still waiting for the diagnosis!

Well, in reality, we're waiting to hear anything at all from the oracle, Stafford Lightman. Has he managed to find a doctor who is interested enough to be bothered to investigate the undiagnosed?

We wonder!

So whilst we wait, it seems an appropriate time to tie up a few lose ends.

When Hari was an inpatient and I had to tell the dieticians and doctors about the undiagnosed problem, I told them that we had been unable to get any sense out of the GPs on this issue.

Let's expand on that then!

In August 2007, having realised that there may be a connection between Hari's sodium intake and the urinary problems and pain, I took Hari to the GP. We saw Ashraf Yousef and he decided that he had no idea what the problem was.

Now then - when a GP is unable to diagnose or treat a problem it is his/her job, indeed their duty, to ensure that the patient is referred to somebody who can do what they can't. Instead of referring her to a specialist Ashraf Yousef insisted on writing to Liz Crowne, Hari's existing endocrine consultant, to ask her to see Hari earlier than the planned appointment in November 2007.

Hari's notes record that this letter was sent on 3rd September 2007.

We then had a series of phone calls from the endocrine team - lesser gods of course!

Apparently Liz Crowne was away but the registrar, James Bursell and some other lesser god thought it would be useful to keep a diary of Hari's intake and fluid output so that they could see how an increased level of sodium intake effected urine output.

I explained to them, repeatedly, that as we had gained substantial improvement by reducing Hari's sodium intake I was not about to make things worse and cause her pain by increasing it again for the sake of a food diary.

They did not appear to be listening!

Nothing new there then!

I then received the standard 'back covering' letter from James Bursell outlining what he thought was the content and result of the last telephone conversation. Apparently he thought I wouldn't talk to him on the phone - actually I'd hung up in total exasperation! Heavens - did he carry on talking to an unconnected phone and think I was listening to him in silence without responding? I wasn't there at all!

He sent a similar letter to our GP. He told our GP that he had not brought the appointment forward.

Nobody told us that!

The letter to me concluded with: '...please do not hesitate in seeking medical advice if you have any acute concerns about Hari's health.' I copied the letter, underlined the last sentence, wrote 'precisely what do you think I've been trying to do?' and sent it back to him.

I received no response!

During the November 2007 appointment the issue was mentioned vaguely but it clearly did not fit the main agenda and was taken no further.

Although there was a great improvement, due to reducing Hari's sodium intake, there were still some glitches but there was no real indication as to why these glitches occurred.

On one occasion the glitch was quite severe and I realised that Hari's fresh juice, at the health food cafe, that morning had contained significantly more apple than usual. The only thing I could think of that might have caused this glitch was the high potassium content of the apples. (When I told the dietician about this she immediately suggested that it was the potassium!)

So the situation seemed to be that increased sodium intake reduced the urine output and caused pain, whilst increased potassium intake stopped the urine output completely (sometimes for over 12 hours) and caused even more pain.

As our request for a referral had already been turned down at the GP surgery I decided to e-mail the practice manager and ask him to ensure that somebody made the referral. We felt that we had better things to do with our time than sit in the waiting room for ages - only to be refused again!

It turned out that the practice manager was away but his stand-in contacted me and suggested a telephone consultation with one of the GPs.

As a result of this I spoke on the telephone with Annette Bradley and I explained what had been happening with regard to the sodium/potassium intake. She said that she would make the referral.

Eventually we realised that the referral had not been made and the practice manager agreed to chase it up.

The referral has NEVER been made!

More Delay Tactics.

2009-04-14T11:45:00.003-07:00

As mentioned in the last post, the copies of Hari's notes and the complaint file should have been sent to the Healthcare Commission, by UBHT/University Hospitals Bristol NHS Foundation Trust, to arrive by Friday 28th November 2008.

As nobody had contacted us by this morning (1st December), to let us know whether or not the papers had arrived, we decided to contact the Healthcare Commission to enquire about this. I e-mailed Ian Howe and the content of his reply was as expected.

The papers have not been sent to the Healthcare Commission!

Why are we not surprised?

Apparently UBHT/University Hospitals Bristol NHS Foundation Trust has now promised to send the papers by the end of this week - so that would be Friday 5th December 2008.

We will not be holding our breath whilst waiting!

It is now over seven months since the complaint was first referred to the Healthcare Commission and over four months since the complaint was returned to the Healthcare Commission, following the earlier attempt at local resolution. After all this time the relevant papers have still not been supplied by the trust.

We wonder if people employed by the trust are still hoping that Hari will present them with an emergency situation before the whole matter is resolved.

Another Little Lose End - Or No Real Opportunities For Discussion.

2009-04-14T11:45:00.001-07:00

So whilst we're still waiting for responses from Loraine Darcy and Stafford Lightman- and for the papers to be sent to the Healthcare Commission by the trust, so that the independent review can actually go ahead, let's tidy up another lose end.

I wrote earlier about the numerous inaccuracies in the letter from Graham Rich, Chief Executive UBHT/University Hospitals NHS Foundation Trust, which was sent to us on April 7th 2008 in response to our original complaint.

These numerous inaccuracies could spawn a lengthy document in their correction but let's start with the most obvious one.

As I have said before, we had been led to believe that whilst Hari's endocrine outpatient care could be transferred to an adult clinic, her inpatient care would need to continue at the children's hospital. All this appeared to change suddenly when the mental capacity act came into force just prior to Hari's outpatient appointment at the children's hospital in November 2007. After the appointment we were taken to see a ward at the adult hospital with a view to Hari being admitted there in the future.

In his letter, Graham Rich refers to this and states: '...I believe that you were not happy about contemplating admissions for Hari to an adult ward and you therefore found it difficult to enter into these discussions.'

We have to wonder exactly which discussions he was referring to.

Between the appointment with Liz Crowne and Stafford Lightman and going to see the ward, we were taken to another room by the ward Sister and Judith Armstrong, Modern Matron. (Maybe I should point out here that Judith Armstrong had followed us into the appointment with the doctors, without having the decency to ask if this was acceptable to us!)

Anyway, once we were in the other room with Judith Armstrong and the ward Sister, they wanted me to answer questions regarding Hari being admitted to an adult hospital. At this point I couldn't answer the questions as we hadn't yet seen the ward. How could I point out the potential problems on a ward we hadn't seen?

After being shown around the ward, by the ward Sister, we were left waiting for Judith Armstrong to put in an appearance. Finally she arrived - only to disappear again! Obviously she was far too busy to give us any of her time!

As it was lunchtime and Hari needed to have something to eat, it became necessary for us to leave before Judith Armstrong came back- if she ever did!

Consequently there were no discussions to enter in to.

We felt that as Hari had a further appointment at the Liz Crowne /Stafford Lightmen joint clinic in May 2008, we could raise our concerns at that appointment. We realised that they could contact us sooner if they wanted to. They did not do so.

Graham Rich also states in his letter: '...Dr. Crowne agreed that she would bring Hari back to the next joint clinic in January 2008 for further discussions about Hari's future care.' He then claims that this plan was overtaken by Hari being admitted on 15th January 2008.

Now then-prior to Hari's admission in January we had received no notification of the May appointment being brought forward to January. In fact when Hari was admitted we were told that Liz Crowne was on holiday - if she wasn't there she certainly couldn't be seeing Hari in clinic!
So events regarding the January appointment were not overtaken by Hari's admission - there had been no January appointment.

The only way that Hari's admission changed events was that some people chose to abuse the admission, whilst she was ill, in order to enforce her eviction from paediatrics; without considering the very real problems and risks that this would involve.

The January appointment didn't exist and the May appointment at the joint clinic had effectively been cancelled. The appointment during the week after her discharge from the children's hospital had a firmly pre-set agenda - which focused on the fact that Hari's eviction had already been ordered.

So there had been no real opportunity for sensible discussions regarding Hari's future care.

A Matter Of Little Interest!

2009-04-14T11:44:00.015-07:00

Time now to expand on another lose end whilst we wait for responses from Loraine Darcy of the Healthcare Commission and Stafford Lightman, oracle.

We don't know if we're still waiting for UBHT / University Hospitals Bristol NHS Foundation Trust to send the papers to the Healthcare Commission. These papers should have arrived by Friday, two days ago, but so far nobody has told us whether or not this has happened.

So - the point to expand on.

When Hari was in hospital I had to tell the doctors about the problems caused by increases in sodium and potassium intake. I also gave them further information, in case it might be useful, but there didn't seem to be any real interest in that either.

The information related to the full extent of the problems with Hari's health which had occurred since September 2003. Since that date our lives had been very different, due to a whole range of health problems which Hari had experienced. We'll go into the finer details of this later, but for now the relevance is that the information was given to the medical team in order to try and assist them in diagnosing the undiagnosed.

I had compiled a list and dated sequence of the problems and stored it on a disc, which was given to John Graham, lesser god, when he came to the ward. He promised that he would look at it.
I bumped into him a couple of times on the stairs and he said that he hadn't looked at it yet - but that he would.

Eventually he came to ward and gave the disc back to me. His sole comment was 'very interesting' which came across as rather patronising. I did ask if it had given them any ideas but the answer was no.

I should have asked if he had actually shown it to 'the boss', or indeed to anyone else at all.

I don't know if he did.

He certainly didn't print off a copy for Hari's notes. We know this because we have since seen and copied Hari's notes - the list was not there.

So, we have given all possible, relevant information to the medical team and the only response was a patronising 'very interesting'.

As usual- we are not surprised!

More Delays Engineered By UBHT / University Hospitals Bristol NHS Foundation Trust.

2009-04-14T11:44:00.013-07:00

And so we encounter yet another delay in the process.

This morning I received an e-mail from Ian Howe at the Healthcare Commission which confirmed what we had been suspecting all weekend. Yet again UBHT / University Hospitals Bristol NHS Foundation Trust have failed to supply the copies of Hari's notes and the complaints file, to the Healthcare Commission, by the agreed date.

The Healthcare Commission need these papers in order to proceed with the independent review, so the trust's failure to supply the papers is preventing the review from going ahead.

Consequently any resolution of the problems is being delayed further and Hari is still left with no appropriate and safe health care and no diagnosis.

We have to wonder if the trust have their own reasons for these continued delays, which are unacceptable and not in Hari's best interests.

The Computer Says Yes!

2009-04-14T11:44:00.011-07:00

When Hari was evicted from paediatrics, with no follow up, we assumed that her cardiac outpatients appointment for today ( December 10th 2008) had been cancelled.

Surprisingly, a few weeks ago their computer decided to send us a reminder for this appointment.

So whatever else is happening- the computer says yes!

We realised that whatever we did regarding this appointment, whether we attended or not, we would be wrong. Clearly we would be wrong not to attend but if we attended then no doubt that would also be wrong and somebody would be bound to say so. We really didn't want to travel there only to be turned away.

So the status of the appointment was queried. The physiotherapist contacted Michele Narey who apparently conferred with another manager. The resulting response was that we should attend for this appointment but there would be discussion about transition to the adult hospital.

We have a theory!

Did somebody forget to tell the computer that the appointment was cancelled?

Obviously to tell us not to attend at such a late stage and with no alternative having been arranged, would reflect badly on the trust - although it's a bit late to avoid that reflection really!
So we seem to have been required to jump through hoops yet again, just to protect the image of the trust.

Hari was seen by Beverly Tsai-Goodman, who informed us that she was under strict instructions from management to transfer Hari's cardiac care to the adult hospital. She said that she had guidelines to follow although she did agree that appropriate health care for Hari would be in a paediatric ward.

So this decision rests, not with doctors who have appropriate medical knowledge and experience of Hari but with managers and those who compile the guidelines.

Guidelines, of course, take no account of the individual and fail to consider patient need.

No surprises there then!

Only When We Laugh!

2009-04-14T11:44:00.009-07:00

This morning the postman brought an ominous looking envelope that was clearly from somewhere within UBHT / University Hospitals Bristol NHS Foundation Trust.

We really didn't want to open this envelope but we're glad we did because we haven't stopped laughing since!

The trust has actually written to us enclosing a survey form. They want to know how well they have handled our complaint and if we have been discriminated against as a result of complaining!!!!

We are going to enjoy completing this survey form but we suspect that they may not be too impressed with our responses!

You really couldn't make it up!

A Little Information - Not A Lot!

2009-04-14T11:44:00.007-07:00

Wonders will never cease!

At last the Healthcare Commission have received some of the documents which they requested from UBHT / University Hospitals Bristol NHS Foundation Trust.

Only some!

It seems that UBHT / University Hospitals Bristol NHS Foundation Trust has managed to send a copy of the complaint file. This file cannot exactly be large and so can't have taken much in the way of effort to copy and send!

They have not sent the requested copies of Hari's medical notes. Apparently they are still photocopying them. Admittedly the notes are quite thick but they have already had adequate time in which to copy and send them.

We don't understand why this is taking so long.

Any suggestions?

A Continuing Lack Of Openess

2009-04-14T11:44:00.005-07:00

When Loraine Darcy at the Healthcare Commission answered our questions in writing, regarding the problems of the safeguarding issues (see Some Answers Arrive But Promote More Questions), we found the need to ask further questions.

I e-mailed her and asked to be told about the content of the telephone conversations, which she had mentioned, between the Healthcare Commission and Anne Berry at UBHT / University Hospitals Bristol NHS FoundationTrust. I also asked for details of the Healthcare Commission's procedures on safeguarding issues.

After three weeks we were wondering why no response had been received so I e-mailed her again, asking if she could let us know when we might expect a response.

Her answer was quite evasive. She claims to have no knowledge of the content of the telephone conversations and suggest we contact Anne Berry about this - we think NOT!!!

She also says that our request for information about the Healthcare Commission's procedures on safeguarding issues should be directed to their information access department.

The result of this is that all our queries on this issue have now had to be directed to the information access department under the data protection / freedom of information act.

Do they think we have nothing better to do with our time?

Shopping 3 : Dieticians 0 !

2009-04-14T11:44:00.003-07:00

Oh those poor dieticians!

Remember the post "Pity The Poor Dieticians Again"? The dieticians had sent ME a form to complete, in which I should either give or refuse permission for them to review Hari's nutritional status. Hari had decided to respond to this herself - as soon as she stopped laughing!

The problem is that by the time the laughter began to subside we received the survey form, from UBHT / University Hospitals Bristol NHS Foundation Trust, asking how well they had handled our complaint and if we had been discriminated against as a result of complaining.
Naturally Hari started laughing all over again!!!!!!!

Today the postman brought us another form.

OOPS!

Hari hasn't responded to the original one yet!

Ok - I know she really should have compiled her response by now but the girl has been busy!

She's something of a shopaholic and with Christmas approaching she has more excuse then usual to hit the shops ! In fact as she's so well and finally pain free she seems to be making up for lost time. Shopping was frequently too painful an experience for her over the last five years, the girl has some catching up to do and is clearly getting her priorities right!

I will nag her to get it done but I'm just too much of a softie to force her to bother with such trivialities when there are more important things in life!

In the meantime we are still waiting for news on the diagnosis front. There seems to be a general lack of interest in that direction; isn't it strange how this form from the dieticians is deemed to be more important than diagnosing the undiagnosed!

A Little Miracle And A little More Bureaucracy.

2009-04-14T11:44:00.001-07:00

It must be Christmas!

Apparently UBHT / University Hospitals Bristol NHS Foundation Trust have finally photocopied Hari's notes and posted the copies to the Healthcare Commission today.

What took them so long?

However, as today is December 22nd, I do hope that they've sent them with a guaranteed next day delivery; risking the Christmas post without this would be rather silly. Further to this I do hope that they have sent them via some kind of secure, signed for, system - after all, this is Hari's entire medical history and I'm not sure it should be trusted to the postal system at all!

There is, of course, always a down side. According to the Information Access Department at the Healthcare Commission they did not receive our request for information, which was sent following our communications with Loraine Darcy. (See 'A Continuing Lack Of Openness'.)

Strange that; it was sent by e-mail and has not been returned to us as undelivered - probably floating around in the atmosphere somewhere - if anyone spots it do give it a nudge in the right direction!

So, we have had to repeat our request and as Ian Howe will not / can not send us further information that we asked him for, we have had to make yet another request to the Information Access Department - in order to ensure that the review is being based on accurate information from the trust.

Our experience so far shows that there is a high risk of information supplied by the trust being inaccurate so, in fairness to Hari, we need to be sure that any inaccuracies are pointed out to those conducting the review. But we must wait for bureaucratic wheels to turn slowly.

Once again policies and procedures are more important than the individual!

A Little More Laughter!

2009-04-14T11:43:00.017-07:00

Remember the posting 'Only When We Laugh' ?

UBHT /University Hospitals Bristol NHS Foundation Trust had made us laugh by sending us a survey form. The survey was designed to ascertain if our complaint had been dealt with properly and if we had been discriminated against as a result of complaining; we thoroughly enjoyed completing the survey!

We decided to be a little careful and despite the prepaid envelope we sent our form back by recorded delivery. Obviously we didn't want our response to be lost in the post!

I have just checked the Royal Mail's online track and trace service and am pleased to announce that our form was safely delivered to the trust.

It's nice to know that they've received the facts!

If They Could See Her Now!

2009-04-14T11:43:00.015-07:00

While we wait for the independent review to go ahead and for responses to our requests for information, all naturally delayed by the Christmas break, maybe a few words about Hari might be appropriate.

Over the last five years we have been more than concerned about her health in general. Things would vary, she would seem to improve and then she would get worse again, getting anyone in the medical world to listen and take these problems seriously was practically impossible.
During the last eleven months, since changing her diet, we have seen a steady and sometimes dramatic improvement in her health. This has been accompanied by improvements in her ability to do things that we sometimes thought had been lost forever.

Whilst she was ill and in pain she often couldn't sit up for very long. When we visited friends or relatives she would have to lie on their sofa and when we were out we would find it necessary to make frequent coffee stops so that she could have a crafty lie down in a cafe or pub. Indeed we would have to choose our coffee stops carefully so that we went somewhere with seating that was suitable for her to lie down - thank heavens for the trend for leather sofas!

This has all changed!

These days we can go to any cafe or pub for our coffee as she is able to sit up for as long as she wants.

On Boxing Day we visited friends and later in the day she was clearly tired but refused the offer of a lie down on the sofa as she was enjoying herself sat in the middle of all the fun and gossip and didn't want to miss a moment of it! Admittedly I did insist she had a bit of a lie down later on, as she was so tired, but she still kept both ears firmly on the gossip!

Her two year old nephew was quite used to seeing her having a lie down on the sofa when he was younger but has now become used to seeing her sitting in her wheelchair all the time. Having spent Christmas Day at their house I got Hari out of the wheelchair, when it was time to leave, put her coat on and then, rather than put her back in the chair, left her to lie down for a short time whilst I put the wheelchair into the car. When I came back into the house I was met with great hilarity; my grandson, her nephew, had announced to all that she was 'a silly Aunty Hari for having a lie down' !!!!!! He seems to have forgotten that for more than half of his life he rarely saw her do anything else but lie down!

There is much more leg movement again, something we haven't seen for some time; so if she does have a lie down on a sofa she is frequently to be found 'legging it' - escaping feet first or simply dangling her feet of the edge - so far there has been no deliberate attempt to trip anyone up but I'm sure that will happen quite soon!

Her fine motor control is rapidly returning to its previous level - she can now pick things up again - she hasn't done that for a long time; at one physio session she decided that the tissue she had needed replacing, so simply picked it up and handed it to the physiotherapist! I am back to having to be careful where I leave things - if I put things within her reach then she is guaranteed to hide them - behind cushions usually - then sits there looking all innocent when I discover that I can't find them!

Her sense of humour has returned with a vengeance and not a day goes by without her getting up to her usual tricks and causing havoc in one way or another. Just a few weeks ago she was tormenting me, as we ate lunch in a pub, by repeatedly reaching over and flicking the beer mats off the edge of the next table - the people sat at that table were not amused - which of course was damn good reason for her to do it even more! Laughter has replaced the moaning and crying due to pain and discomfort - life is good!

We wonder if the doctors, who said we were wrong about her diet, would like to explain all these improvements?

Only When We Laugh Again!

2009-04-14T11:43:00.013-07:00

The Christmas lull continues and we are still waiting for various responses and requested information.

Time is passing and it is now nearly a year since Hari was evicted from paediatrics. Nothing has been resolved.

Time is passing and it is now over two months since we jumped through hoops by attending the appointment with the oracle Lightman. (See 'The Missing Link'.) We have heard nothing so maybe none of his colleagues are interested in investigating and diagnosing the undiagnosed.

BUT!

But there is always something to make us laugh! (See 'Only When We Laugh'.)

Today the postman brought another ominous looking letter. It turned out to be an official Department of Health survey form - this time about GPs - oh what fun!!!!!!!!!

Life Just Gets Better And Better!

2009-04-14T11:43:00.011-07:00

Prior to the improvements in Hari's health that came about as a result of changing her diet, life could be more than a little restricted. Hari often could not cope with being around too many people or sitting for long periods and the pain levels were unpredictable. We couldn't do the things we were used to doing and certainly couldn't have contemplated going to the theatre or cinema. So we hadn't been to the theatre or cinema for over five years........

UNTIL TODAY!!!!!!!!!!!!!!!

Late last year I read that the film 'The Reader' was being released this month. Having read the book a few years ago I was desperate to see the film and didn't want to have to wait for the DVD release. So - it was now or never - was Hari going to manage sitting through a two hour film? OK - I knew that she would but after the way things have been for the last five years, I can be excused having a few reservations and being concerned that we might be rushing things.

Off we went to try out a wonderful, new, accessible cinema and it was heaven! The film was amazing! We really are getting our lives back at last. The only problem was that the heating didn't seem to be too efficient so eventually we resorted to snuggling up in my seat together - with Hari's quilt wrapped round us!

It really is time that doctors gave some consideration to how their actions (0r lack of them!) can adversely effect people's lives - if any of them had bothered listening over the last five years our lives wouldn't have been so restricted.

Close But No Cigar!

2009-04-14T11:43:00.009-07:00

The Healthcare Commission asked UBHT / University Hospitals Bristol NHS Foundation Trust for copies of Hari's notes in Autumn 2008.

Initially the trust engineered another delay by 'misunderstanding' the request. Eventually the copies of the notes should have been with the Healthcare Commission by the last week in November. Obviously the trust failed to comply.

After some time the trust finally managed to send copies of the complaint file but no medical notes. These were supposed to follow swiftly!

Finally the copies of the notes were posted to the Healthcare Commission in the last few days before Christmas 2008.

Or were they?

By January 6th 2009 we had received no confirmation that the Healthcare Commission had received the copies of the notes. We felt that even Royal Mail could have got them there in this time, so I e-mailed Ian Howe to enquire whether or not he had actually received them.

His reply held no surprises.

He had received SOME of the notes!

Apparently some of the notes were missing and despite continued attempts to locate them they had not been found.

Do you suppose that they have looked carefully in the direction of the shredder?

After making further enquiries I finally discovered that the missing section dates from 2007 onwards. SO - UBHT / University Hospitals Bristol NHS Foundation Trust appears to have mislaid the very section of the notes that relates to the complaint. They appear to have lost all records of her January 2008 admission and all records relating to her subsequent eviction from paediatrics.

Why are we not surprised?

Well we are not surprised at all - we had expected something like this.

DON'T PANIC!!!!!

We had the sense to access the notes and obtain copies BEFORE making the complaint. So we have been able to supply the Healthcare Commission with copies of the missing section today.
OK we had plans for this afternoon and had to cancel them in order to e-mail hundreds of copies to the Healthcare Commission - but at least they now have the section that the trust had 'lost'.

My eldest daughter's response to this latest little farce was simply:

"Nice Try Guys!"

Hari's response was:

"Close but no cigar !"

Time for a sing along folks - all together now..........

' You came close
Close but no cigar
You didn't miss by far
You know you came this close
Close but no cigar'

We were at least ten steps ahead of them all the way!!!!!!!!

A-musing!

2009-04-14T11:43:00.007-07:00

A few thoughts on yet another little loose end.

I did promise you more about weighing and blood tests!

This time last year our nightmare was just beginning. Hari was admitted to hospital on January 15th 2008- and all our problems were about to start.

Remember that during her admission Ben Marsh gave his Oscar winning performance which included an insistence that Hari should attend the GP on a weekly basis to be weighed and have blood tests. ( See 'Patients of the lesser gods'.) There was no explanation of why this was needed.
During and just after the admission other people wittered pointlessly on about the importance of this plan - weekly weights and blood tests were insisted upon but nobody explained why - such are their communication skills!

I have commented earlier that the GPs have never requested that Hari be weighed or have blood tests - they have our address, phone numbers and e-mail address but have never bothered to contact us about any arrangements for this.

Then consider the face to face contacts.

Refer back to 'The Missing Link' and 'The Computer Says Yes!' - both of which detail 'jump through hoops' appointments at hospitals which were of no real use to Hari - they simply served to try and make the trust look good as the independent review by the Healthcare Commission was going ahead.

So we attended both appointments.

At neither appointment was Hari weighed.

At neither appointment did anyone suggest any blood tests.

That must have been really important and necessary then!

Thought For The Day.

2009-04-14T11:43:00.005-07:00

A thought for the day!

The only thing necessary for evil to triumph is for good men to do nothing.

So if good men, and women, do nothing evil will triumph.

It's OK- we're not going to go all philosophical - we are just aware that there are those within UBHT / University Hospitals Bristol NHS Foundation Trust who are decent human beings and who know that Hari should be receiving health care; health care that includes the investigation and diagnosis of the undiagnosed - yet they do nothing.

You have to wonder why!

Digression And Expansion.

2009-04-14T11:43:00.003-07:00

So whilst we're waiting for things to happen maybe we should expand on another point.

In her letter of June 24th 2008, Geraldine Johnston states that I had based 'my' decision not to accept Hari moving to adult services on a failed endoscopy at our local hospital.

The endoscopy attempt had occurred in an adult hospital but that was not the reason for any decision. This event had been used as an example of how things could and would go wrong, or be unmanageable, for Hari within an adult hospital.

Let's expand on the details.

In 2006 I had to take Hari to A&E at the local hospital as large amounts of blood were being aspirated from her NG tube. One doctor there said that she would have to be admitted to have an endoscopy. This was overruled by another doctor who sent her home promising to have the endoscopy arranged as an outpatient.

Nothing happened!

We chased it up. It was suggested to me that she didn't really need the endoscopy at all but it was finally arranged after I stood my ground.

The whole attempt at the procedure was problematic. It had been arranged without anaesthetic and it was clear that nothing could be achieved without the whole team and myself holding Hari down! They did not have an appropriately sized mouthpiece so Hari had a mouthpiece that was too large forced into her mouth, which was easily squashed as Hari's muscle tone increased due to the awful experience they were putting her through. The problems were worsened by the spray they had used on her throat.

I was amazed that the doctor doing the procedure seemed to be more concerned with his speed record than the need for a thorough investigation!

Eventually he gave up and announced that Hari would need to have the procedure under anaesthetic on another occasion.(In all honesty he really shouldn't have attempted to do it under these circumstances in the first place!)

I queried where the second attempt would take place and initially he insisted that it would happen at the same hospital - I was horrified! This hospital had no suitable back up for Hari should anything go wrong under anaesthetic and in such a situation she would have to be moved miles to a different hospital - if they could actually find anywhere willing to take her. The doctor swiftly realised that this was not an option!

Hari was again referred to the children's hospital where the endoscopy was safely performed under anaesthetic and severe oesophagitis was diagnosed. There were ulcers the full length of her oesophagus, ulcers that bled as soon as the endoscope came anywhere near them. I would load the pictures here for you to see but some of you may be squeamish and there is a lot of blood!

So much for the earlier claim by the local hospital that she didn't really need the procedure!

So there is clear evidence that Hari's care cannot be safely managed in an adult hospital.
There is also clear evidence that attempting procedures in an adult hospital causes distress and risk to Hari, with unacceptable delays as Hari has to wait to be referred back to the children's hospital when the adult hospital fails her.

Effectively Hari has to wait twice!

But I'm forgetting something! They won't actually see Hari at the children's hospital any more so she would only have to wait once - when the adult hospital fails her there is nowhere else for her to go!

A Mysterious Missive!

2009-04-14T11:43:00.001-07:00

Whilst we're still waiting for the report from the Healthcare Commission to be completed we should continue to ponder other relevant points.

A little missive exists which raises cause for concern.

Within this missive, which originates from within the rambling bureaucracy of UBHT/ University Hospitals Bristol NHS Foundation Trust, it clearly states that copies of complaint correspondence going back over a number of years have been removed (by the sender) from Hari's medical notes.

Now then, we could understand these items being copied for the purpose of being included in the documents being sent to the Healthcare Commission but to REMOVE them?

This sounds rather strange!

Nothing should be deliberately REMOVED from Hari's medical notes.

Were UBHT/ University Hospitals Bristol NHS Foundation Trust deliberately attempting to conceal from the Healthcare Commission the fact that we have had cause to complain in the past? Cause for serious complaint!

Never mind - we have our own copies!

Still no cigars then!!!!!!!!!!!!!!

Fact And Fiction!

2009-04-14T11:42:00.007-07:00

It's Saturday!

One of my favourite things about Saturday is the Guardian Review. My treat of the week is to sit with this section of the paper whilst I drink my coffee or hot chocolate and ignore the rest of the world!

I'm quite selective about the order in which I read the various articles and after one or two particular favourites I always skip past the non-fiction reviews in order to read the fiction reviews. (Non fiction can wait!)

But there are times when fact is far more important than fiction!

Remember that back in November 2008 we were required to jump through hoops to attend an appointment with Stafford Lightman? (See 'The Missing Link'.)

Well following that appointment Stafford Lightman wrote to our GP - the letter definitely comes under the heading of 'fiction'!

I'm not going to bore you with the trivialities but one particular section is very important. In the last paragraph Stafford Lightman states:

'Furthermore I am worried that if Hari has insufficient salt input, she may well lapse into the hyponatremia which has caused her further problems in the past and been the reason for acute admission.'

Obviously this concern was the reason for NOT taking bloods for testing at the appointment!

Are we back to the allegations that Hari's episodes of hyponatremia were a result of my neglect through dietary input? (See 'The Current Situation' and 'The eviction'.)

So let's get the FACTS straight on this issue!

Hari has had two severe chest infections (approximately eleven months apart) which resulted in her being admitted to hospital. On both of these occasions her sodium levels were low. This was due to SIADH (see 'The Eviction') which is associated with the chest infections.

On the first of these occasions the sodium levels were drastically low. This was BEFORE we had identified the link between the undiagnosed problem and Hari's sodium/potassium intake.

Therefore, it was also BEFORE any changes had been made to her diet.

Prior to her admission on this occasion Hari was seen at our local A&E, at the GP surgery and at Bristol Children's Hospital (in that order) within four days. On each occasion she was sent home and no blood tests were performed. On the day after she was seen at Bristol Children's Hospital she was taken to our local A&E again as an emergency. The doctor who saw her told me that if any of the people who had seen her on the previous three occasions had taken bloods then her low sodium would have been detected. This would have prompted action and prevented the sodium dropping to such a low level - so low that they did the test twice as they didn't actually believe it!

As a result of Hari's condition on this occasion I was taken aside in A&E and asked if I actually wanted everything possible done for her. Remembering that still makes me feel physically sick!

On the second occasion the sodium was low - but nowhere near as low as the first episode- this was AFTER we had identified the link between the undiagnosed problem and Hari's sodium intake- and AFTER we had begun to make changes to her diet.

I wonder if the oracle Lightman would like to explain that one!

Still Waiting Patiently!

2009-04-14T11:42:00.005-07:00

Today is February 5th 2009.

There is, of course, a little significance about the date.

Today is exactly three calendar months (just over thirteen weeks) since we had been required to jump through hoops and attend the appointment with Stafford Lightman.

According to Sue Jones this appointment was for a second endocrine opinion. We had expressed concern that if the undiagnosed problem was not endocrine in origin this option would be of limited use. We had also previously expressed concern that once Hari was discharged from the children's hospital as an inpatient at the end of January 2008, nobody would give this undiagnosed problem another thought.

Stafford Lightman told us that he would discuss the problem with colleagues and get back to us.

He also told our GP in his letter that this was his plan.

Three months on we have heard nothing at all.

Good job we weren't holding our breath in anticipation then!

A Happy Anniversary?

2009-04-14T11:42:00.003-07:00

Today is February the 7th 2009.

This is yet another significant date.

It is a year today since Hari was officially evicted from paediatric care within UBHT/University Hospitals Bristol NHS Foundation Trust. So it is a year today since 'they' began preventing Hari from accessing any safe, appropriate and useful health care.

What have 'they' achieved during that year?'

They' have successfully prevented Hari from getting her undiagnosed problem diagnosed.
'They' have ensured that Hari will have no safe and/or appropriate health care if an emergency should arise.
In doing this 'they' have ignored all the risks that this poses.
'They' have attempted to bully us into accepting a plan, that cannot meet Hari's needs, by using Social Services and 'Adult Protection' as a threat.
'They' have engineered deliberate delays in the complaints processes; delaying the work of the Healthcare Commission and prolonging the time that Hari is without safe and appropriate health care - obviously delaying the possibility of diagnosis even further.
'They' have 'lost' Hari's medical notes - knowing that this was causing further delays in the work of the Healthcare Commission and with no concern for the effect these delays could have on Hari's health.

Anyone would think that 'they' don't want Hari to get a diagnosis for the undiagnosed!

'They' have prevented medical staff from speaking out, from speaking the truth and from doing what is right for Hari.

We wonder if 'they' are happy with 'their' achievements during this year and if 'they' feel that 'they' have cause to celebrate this anniversary?

Et cetera! Et cetera! Et cetera!

2009-04-14T11:42:00.001-07:00

The postman brought another letter this week that was clearly from UBHT/University Hospitals Bristol NHS Foundation Trust.

The envelope was stamped 'first class mail' and 'private and confidential'- so once again we didn't really want to open the letter. What were they throwing at us now?

It was another 'only when we laugh' moment!

The Chief Executive, Graham Rich, has written to thank us for completing the complaints survey - and for writing so fully in respect of our concerns!

Did they think that we wouldn't bother to return the survey?

The letter also says that as the complaint is now with the Healthcare Commission it is: 'not appropriate to take any further action at this stage.'

So - it is not appropriate to take any further action with regards to the failures of their complaints system and the discrimination which results from daring to complain, because a complaint has been made to the Healthcare Commission.............

BUT!

But it seems that it is appropriate, whilst a complaint is being dealt with by the Healthcare Commission, for UBHT/University Hospitals Bristol NHS Foundation Trust to allow staff to harass, bully and intimidate us; to allow staff to try to manipulate the Healthcare Commission to support those actions; to allow staff to manipulate our GP surgery in respect of making an inappropriate request for an Adult Protection Review; to continue to deny Hari safe and appropriate medical care, to continue to refuse to diagnose the undiagnosed regardless of the effect this may have on Hari's health; to cause deliberate delays in the process of the complaint that has been submitted to the Healthcare Commission and to lose medical records which they are legally required to keep safe and secure.

Et cetera. Et cetera. Et cetera!

They seem to have a strange set of principles!

What's In A Name - Or Term Of Reference?

2009-04-13T12:32:00.011-07:00

In the posting 'A Happy Anniversary' we made much use of the word 'they'.

Some of you may be wondering why we didn't name people instead of typing 'they'.

Well there is some dispute and a little subterfuge as to the identity of 'they'.

You see doctors have used the term 'they' when talking about the issue of Hari's health care.
Also nurses and other staff have used the term 'they' when talking about Hari's health care.
Indeed management have used the term 'they' when talking about Hari's health care.
But nobody ever volunteers information about who 'they' are - and we have asked!
We just hear things like 'admissions will need to be in Childrens even if 'they' don't like it' .

So who might 'they' be?

Could 'they' be individual doctors?
Could 'they' be individual nurses?
Could 'they' be individual managers?
Could 'they' be the transition group who have discussed Hari but not even bothered to ask her opinion on the subject?
Could 'they' include individuals who's only interest is their CV?

Geraldine Johnston stated in her letter, of June 24th 2008, that 'she' could not agree to Hari being admitted to the Children's hospital but in all fairness, Geraldine Johnston is not 'they' she is 'she'.

She = singular.
They = plural.

So references to 'they' are made in reference to more than one person.

The funny thing is that 'they' really think that we don't know!

Has That Shredder Been Working Overtime?

2009-04-13T12:32:00.009-07:00

We have been quietly trying to ascertain the facts about the content of the complaint file sent by UBHT/University Hospitals Bristol NHS Foundation Trust to the Healthcare Commission.

We had good reason to be concerned about what had and hadn't been sent to the Healthcare Commission as part of this file. Concerns that were enhanced by the loss of medical records by the trust.

The complaints file should have contained everything relating to the complaint we made to UBHT/University Hospitals Bristol NHS Foundation Trust. That is, it should contain every item of correspondence that has been generated by the complaint being made.

We are now officially aware that it did not contain many items that should have been there.

So where are the missing items from the complaint file?

What have staff at UBHT/University Hospitals Bristol NHS Foundation Trust done with the missing items?

Somebody MUST know where they are.

Are the missing items from the complaint file well hidden, waiting to miraculously reappear with the missing medical notes once the Healthcare Commission has finished its review and report?
Have the missing items from the complaint file been meticulously fed through a shredder along with the missing medical notes?

Or have the missing items from the complaint file been dumped, along with the missing medical notes, in a convenient builder's skip?

Time to 'fess up guys!

A Blast From The Past!

2009-04-13T12:32:00.007-07:00

I saw a woman in the street today - she was the blast from the past!

We were both heading for the same shop but when I saw her I immediately rearranged my itinerary and went to a different shop first. I had neither desire or intention to be in the same shop as that woman! (I'm particular about the company I keep and my standards are never that low!)

I have written in this blog about the false allegations against me and the threat of Social Services and adult protection that we were subjected to during the last year. Allegations and threats that arose for two reasons; firstly because I had dared to challenge the medical team when they were clearly wrong about the undiagnosed problem and secondly, because I had the audacity to complain, first to the trust and then to the Healthcare Commission.

It isn't the first time that we have encountered such bullying, harassment and intimidation.

Throughout Hari's life I have noted that the first line of defence within the trust is attack! When they are in the wrong or out of their depth then the easiest option is to blame the mother. That is how they do things in Bristol!

For fourteen years I was repeatedly told that I didn't feed Hari enough - the implication being that her lack of growth was entirely my fault. When they finally diagnosed the real problem (and I am still saving that story for later!) nobody bothered to apologise, either for the harm they had caused Hari or the way they had treated me. Naturally UBHT/University Hospitals Bristol NHS Foundation Trust refused to take any action at all when we complained.

You have to wonder why, during those fourteen years, the allegations that I was neglecting Hari never went beyond the hospital.

The question you need to ask is: why didn't social services bang on our door and take Hari away if I was so clearly starving her?

I'll tell you why!

'They' knew all along what the diagnosis would be.

How would 'they' have explained Hari's continuing lack of growth if somebody other than myself was responsible for her care?

There's your answer!

There were other occasions when allegations, implications and threats were more important to the hospital than Hari and her need for adequate health care.

I can list them all!

And I can link every one of those occasions to somebody within the NHS neglecting Hari and her health care, either through total ineptitude or deliberate neglect that was at times based on discrimination.

So back to the woman in the street!

I first encountered her in 1984 at the maternity hospital - when the first false allegation was made against me. An allegation that was made to cover the negligence that had occurred during ante-natal care and Hari's birth. (I'm going to save those stories for later too!) This woman's attitude and behaviour at the time were appallingly unprofessional and it won't be too long before I decide to relate that particular story in full !

Kicking Our Heels - But Maybe We Should Be Kicking Butts!

2009-04-13T12:32:00.005-07:00

So there we were waiting patiently for the report from the Healthcare Commission. Expecting the report to be dispatched imminently.

Well that was silly wasn't it!

Every time we expect things to move forward somebody comes up with yet another delay.

The current stage is no exception!

Having been told that the independent medical opinion was expected two weeks ago and that as soon as it was received the Healthcare Commission would complete the report within ten days, we had expected to be in receipt of the report by now.

That was clearly expecting too much!

It seems that the latest development is for the Healthcare Commission to decide to ask UBHT/University Hospitals Bristol NHS Foundation Trust to look for more information on their computers. So, having lost medical records and having eventually sent what information they had on computer to the HCC, they are being asked to look again - causing another delay.

At every delay in the process Hari is further denied appropriate and safe medical care and a diagnosis for the undiagnosed. Every delay is a risk to her health and well being. Every delay risks that the underlying undiagnosed condition could worsen further as, until we get the diagnosis, we cannot be sure that we are doing everything necessary to meet her needs in relation to this problem.

We have made our feelings on this matter known!

As Time Goes By - Quietly!

2009-04-13T12:32:00.003-07:00

Today is March 5th 2009.

It is now four calender months (seventeen weeks) since the appointment with the oracle Lightman. (See:'The Missing Link.)

That appointment with Stafford Lightman was supposed to be Hari's passport to diagnosis.
People within UBHT/University Hospitals Bristol NHS Foundation Trust had informed us that Hari's problems were within his field and that he would investigate it. Indeed the trust assured us and the Healthcare Commission that this appointment was important in order to get an endocrine opinion on this issue.

Of course the oracle Lightman professed to have no idea at all of what the problem was. He insisted that he would consult with colleagues to find somebody who was interested and that we would hear from him.

So what have we heard?

Precisely nothing!

No telephone call.
No letter.
No investigations.
No diagnosis.

It seems to us, as indeed it would to any sane person with a modicum of intelligence, that all the time effort and expense which the trust have invested in ignoring Hari's needs, discussing her at meetings, forcing the issue to be taken to the Healthcare Commission, 'losing' medical records etc., would have been better directed in providing Hari with the diagnosis which they know she needs- something they could and should have done over a year ago.

So time, money and resources have been liberally used not on patient need and health care as we would expect - but on deliberately preventing the diagnosis of the undiagnosed.

And they actually pay people from public funds to do this!

A Convenient Discovery!

2009-04-13T12:32:00.001-07:00

Well would you believe it!UBHT/University Hospitals Bristol NHS Foundation Trust have actually found Hari's notes!

Now whilst it is a relief to know that they have not been sitting in a skip somewhere, it is also extremely annoying at this point in time as it has created yet another delay.

But we realise that this was 'their' intention!

Why else would the 'lost' notes suddenly reappear just in time to stop the Healthcare Commission from issuing their report?

It seems the Healthcare Commission cannot issue their report based in incomplete medical records if the records are now available.

We realise that UBHT/University Hospitals Bristol NHS Foundation Trust are well aware of this fact.

Why are 'they' so determined to prevent the process from continuing?
What are 'they' trying to hide?

Of course we also realise that as the notes have been 'lost' for so long 'they' have had sufficient time to make any alterations and/or removals which 'they' might find beneficial to their stance.

'They' seem to forget that there is no way of hiding the FACT that Hari has an undiagnosed problem which 'they' have refused to investigate and diagnose! There is no way of hiding the FACT that 'they' could have investigated and diagnosed this problem over a year ago but that 'they' deliberately chose not to do so.

What kind of people behave in this way?

'They' also know something else.

'They' know that the Healthcare Commission is closing in a few weeks time and that now there is no time for the review and report to be completed before the closure.

As a result of this the file is being transferred to the Ombudsman and now it will take even longer to get any resolution - but 'they' knew that when' they' pulled this particularly nasty little trick!

It might seem that having the file transferred to the Ombudsman is a good thing (after all the Healthcare Commission has proved to be pretty damn useless!) but we already had more than enough evidence of wrongdoing by the Healthcare Commission to take the case on to the Ombudsman if we needed to - we just didn't want any more delays - for obvious reasons. For equally obvious reasons UBHT/University Hospitals Bristol NHS Foundation Trust is keen to create as many delays as possible.

So- thanks to the very juvenile little games that have been played by UBHT/University Hospitals Bristol NHS Foundation Trust, the complaints processes of the last year have been a complete waste of time.

We have been patient throughout this - but not any more!

So now it's time we start to tell the whole story - go back to the beginning and list the whole series of mistakes and deliberate negligence and discrimination that we have encountered over the last twenty-five years and which we have been 'saving for later'.

We're not going to save anything for later any longer.

Hari And Her Dustbin Full Of Doctors is about to

GO LARGE!

Back To The Beginning.

2009-04-13T12:31:00.014-07:00

Going large really does mean going back to the beginning and going back to the beginning means going all the way back to ante-natal.

The ante-natal clinic is where they are supposed to monitor your pregnancy and notice any problems.

The doctor at the ante-natal clinic, Annette Bradley, failed to notice the most significant thing about this pregnancy.

There were TWO babies!

Admittedly scans weren't as routine back then as they are now but for some obscure reason she also failed to send me for a scan. She seemed to be sending everybody else for scans - but not me and in all honesty she should have realised that I was carrying twins when she examined me.

Had the fact that I was carrying twins been diagnosed then most, if not all, of the resulting problems could have been avoided.

When I went into labour I was admitted to the local maternity unit that dealt with births where no problems were expected. Once there I was told that the 'baby' was breech and the cord was in the way - then transferred to the nearby hospital for a cesarean section.

Once there the members of a team buzzed around preparing me for the op and I signed the consent form. The obstetric consultant was waiting in theatre and he sent a message to say that he would do the delivery in theatre but he was not doing a c-section. At this point he had not even set eyes on me and a member of the team assured me that once he saw me in theatre he would change his mind and do the c-section.

He did NOT change his mind!

The problem with that was that the twins were not just twins - they were 'locked twins'.

This meant that the first baby to be born was breech and the second baby was was correctly positioned with her head down. Coupled with this they were facing each other and the head of the second baby was below the head of the first baby. So as the obstetrician tried to deliver the first baby their heads were being forced backwards - with the very real potential for severe trauma being caused to their necks before they were even born!

At some point the obstetrician finally realised the seriousness of the situation and I was rapidly anaesthetised in order for the twins to be manipulated apart and delivered with forceps.

After the birth the twins were transferred to St. Michael's hospital in Bristol to be cared for on the special care baby unit. I was transferred in a different ambulance later on that evening.
Naturally all written records of the birth were 'lost' in transit.

Why are we not surprised at that?

(I should add here that the first explanation I got regarding the details of the birth came from friends and neighbours who had acquired their information from staff at the local hospital - so much for patient confidentiality! These details were later confirmed when a doctor I had never seen before stood at the end of my bed one day - explaining it all to a bunch of students. This would not be the last time that they didn't bother to explain something directly to the patient!)

A Steep Learning Curve - Part One.

2009-04-13T12:31:00.013-07:00

Prior to the birth of my twins my experience of hospitals was limited to the birth of my eldest daughter.

So my impression of the health service was dependent on its public face of dedicated and caring professionals.

I was about to learn the truth - and fast!

In all honesty there were some thoroughly decent staff to be encountered at St. Michael's Hospital at that time. Unfortunately there were times when they were overshadowed and let down by others.

On the special care baby unit (known as SCBU at that time) the vast majority of the staff seemed OK. There were some little hiccups but no obvious major concerns that I was aware of at the time.

The situation on the ward was a different matter entirely!

I won't name the ward as that would be unfair on the staff who work there now but the situation there, at that time, was intolerable and unacceptable.

Like SCBU there were some really good nurses on the ward; nurses who did their jobs to a high standard and with attitudes that were applaudable. Unfortunately they were let down by a core group of nurses of spent their days bullying patients. The atmosphere on the ward changed according to who was on duty. Some of this small group of nurses were not so bad if they were on duty at different times to the rest of the group but if a few of them were on duty together the shift would be a nightmare. I remember a few escape parties - some of us would go down to the foyer and get coffee from the machines- sitting there rather than on the ward in order to get away from this group of bullies.

For some reason, which I don't understand, I seemed to be their main target and found myself being harassed by this group whenever they had the opportunity. On one occasion some friends who came to visit were appalled at the attitude of their ringleader in the way she treated me and spoke to me. I was systematically bullied into abandoning breast-feeding in favour of bottle feeding, whilst the poor girl in the next bed who wanted to bottle-feed was being bullied for that choice.

As a result of the complications of the birth I had some medical problems that were more or less ignored. The main issue was not properly addressed for some time; indeed it was only addressed on the day that my intention had been to catch a bus back to my home town in order to see our GP!

This was not what I had thought any hospital would be like. It was certainly not a situation that I would have imagined any hospital would tolerate.

I felt sorry for the decent, good nurses who were having to put up with this situation from their colleagues. It reflected badly on them as the reputation of their ward was not what it could and should have been.

A Steep Learning Curve - Part Two.

2009-04-13T12:31:00.011-07:00

As if the problems with the aforementioned group of nurses was not enough - I soon encountered another source of harassment.

Employed within the hospital was a 'medical social worker'. (See: 'A Blast From The Past!'.)
Initially she introduced herself to me on SCBU and said that she saw all mothers who had a baby on the unit. This was fair enough but it wasn't long before she kept harassing me on the unit and on the ward. Her constant appearances were driving me crazy and I had no idea why she refused to leave me alone. I even told her this and suggested that she should go and harass somebody else but her arrogant response was that she had no concerns about other mothers - only about me!

What concerns?

Well I soon found that out!

Apparently she had concerns because I had reportedly been picking my babies up by their necks!

I must immediately refute this allegation - it was totally untrue!

When I challenged this allegation she insisted that one of the nurses had made the original claim. My immediate response was to tell her to go and fetch the nurse in question so that we could sort this little matter out there and then. She never did come back with the nurse -

I wonder why?

Of course a record of such an allegation might prove useful to the health trust. Click back to 'Back To The Beginning' and remind yourself that the complications of the birth could have caused neck injuries to both babies. Think onwards - if as they grew and developed - any problems with regard to their necks became apparent - it would have been very useful for the trust to be able to focus on such an allegation instead of the risks and negligence associated with the birth.

So here was the first totally false and unfounded allegation against me; conveniently positioned to try and protect the trust from the negligence that had already occurred.

I was beginning to learn how things worked!

A Steep Learning Curve - Part Three.

2009-04-13T12:31:00.009-07:00

Hari was slow to gain weight from the start. She had some problems with feeding but should still have been gaining more weight than she did. She found feeding difficult but it seemed that no real attention was paid to this fact, rather there was some concentration on the ridiculous idea of me not feeding her enough.

In truth Hari would take whatever amount she could manage - some days more than others. This was obviously effected by the difficulties she found with feeding.

Early on she developed some kind of infection and was what they referred to as 'jittery'. Blood tests were done whilst she was on SCBU but this revealed nothing. Once she was on the ward further blood tests were done as some of the doctors had an 'idea' but again this revealed nothing. There was also vague mention of a heart murmur but the doctors didn't seem to be able to make their minds up about whether or not this murmur existed! In general they didn't seem to give me much information about anything and when we went home after five weeks I was armed with a lot of instructions and very little information.

The instructions were related to things like Hari being fed three hourly - little and often - and she was not to be taken outside at all until her weight increased significantly. Apparently a home help was to be arranged for two hours twice a week to stay with Hari so that I could collect my eldest daughter from playschool and buy food. I was told that I had to rely on friends to take her to playschool and to shop for anything else we might need in the way of food on the other five days of the week - if I ran out of anything then I had to hope that a friend would be able to go and get it.

Maybe it was because they were so busy organising our lives and turning our home into a prison that they omitted to tell me something else. Something else that was vitally important.

They were already aware that Hari had some degree of disability - probably related to a brain injury - probably as a result of the birth complications.

They just didn't bother to tell me about it.

Obviously the learning process needed to be rapid!

An Introduction To Bristol Children's Hospital.

2009-04-13T12:31:00.007-07:00

It wasn't long before we found ourselves heading back to a Bristol hospital.

One evening Hari's twin sister was clearly unwell and I had to call the out of hours doctor who decided to send her to the Children's Hospital in Bristol (Old Building), where she was subsequently admitted. She was diagnosed with viral meningitis.

As Hari was still (according to the 'powers that be') too small to be taken out in public in case she caught something she too had to stay at the hospital and was in the same cubicle on the baby ward as her sister. It wasn't long before it became apparent that she too had developed the same infection - although when I alerted the ward staff to this it took some hours before she was finally seen by a doctor.

Most of the nurses on the ward were fine, despite the fact that they were having to work in an atmosphere and regime that did not enable them to deliver optimum care to their patients.

The ward sister ruled over both the nurses and parents with some very strange ideas!

She insisted that the babies were all fed four hourly; so if a baby was hungry after three hours they were made to wait until their feed was due. If the sister wasn't on duty the nurses would allow a hungry baby to be fed early but would write on the feed chart that the baby had been fed at the 'four hourly' time. Consequently when the sister came back on duty babies would have to go even longer without feeds as the nurses had to stick to the time the feed was due on the feed chart! (Mothers who were breast feeding were able to escape this dictatorship and feed their babies when they wanted to.)

At this time Hari was still on three hourly feeds and the doctors insisted that this should continue. The sister reluctantly agreed to this but made it clear to me that she was not happy about this at all and that this concession was only being made because the doctors had wanted it.(Clearly parents would not be allowed such a concession without a doctor's permission!)

There was another very strange system with regard to what the babies wore. The ward had a stock of baby clothes and the sister insisted that all the babies should wear hospital clothes and not their own clothes.

The problem with this was that many of the clothes were well worn and some of them were stained. The nurses would do their best to bring their patients clothes of a reasonable quality (parents were not allowed to fetch the clothes from the cupboard!) but there were times when the clothes I was expected to put on my babies were clothes that I wouldn't even consider fit for a jumble sale! In truth some of them were only fit for the bin! Parents were still expected to dress their babies in these items.

A Small But Interesting Encounter!

2009-04-13T12:31:00.005-07:00

When the twins were in the Children's Hospital on that first occasion an interesting event occurred.

The canteen was in the basement of the Maternity Hospital across the road and within a day or so of being there I was just walking into the canteen to get some lunch when I heard a familiar voice behind me.

"What are you doing back?" the voice announced loudly "We KNEW something would happen with Hari!"

I turned around and there she was!

The midwife who had been the ringleader of the orchestrated bullying campaign on the ward we had been on in the Maternity Hospital!

I took great pleasure in putting her in her place (by this time I was learning fast!) and informing her that it was not Hari who had initially been admitted but her twin sister - with an infection that had not been formally identified at that point.

She didn't have any answer to that and the other nurses who were with her were desperately trying hide the fact that they were extremely amused at how stupid she looked at that moment!

However, this incident does raise an interesting point.

Exactly what was it that they KNEW would happen, what had they been expecting to happen and why?

Back To The Future - Part One,

2009-04-13T12:31:00.003-07:00

We'll just take a quick break from the historical and return to the present.

The postman delivered another envelope this morning that was clearly from UBHT/University Hospitals Bristol NHS Foundation Trust.

Opening it was not too ominous a task as we could tell from the details in the window of the envelope that it was an appointment.

They have sent Hari an appointment to see the Oracle Lightman in August.

A little revision reminds us that it was the Oracle Lightman who was, according to everybody else, supposed to ascertain a diagnosis for the undiagnosed. When we saw him in November 2008 he claimed that it wasn't his specialty, that he would consult with colleagues and that we would definitely hear from him.

In a few days time it will be five calendar months or twenty-two weeks since that appointment and still we have heard nothing at all on this important issue.

The appointment for August is over four months away so obviously this is not about the undiagnosed problem, it is about transfer of care to the adult hospital.

So this confirms what we already knew - nobody is doing anything at all to further Hari's chances of a diagnosis for the undiagnosed.

When Hari was discharged as an in-patient from the children's hospital at the end of January 2008 I expressed my concern that once she left the building nobody would give another thought to the undiagnosed problem. Clearly I was right -

nothing new there then!!!!!

Tom Hilliard insisted that Liz Crowne would deal with it.
Liz Crowne insisted that Stafford Lightman would deal with it.
Geraldine Johnston insisted it would be dealt with in the adult hospital.
(Judith Armstrong and Anne Berry did what they are good at!!!!!!!!!!!!!)

Some doctors are clearly being prevented from doing their jobs properly.

We believe that UBHT/University Hospitals Bristol NHS Foundation Trust has made a deliberate decision to withhold the diagnosis. They have done this to Hari before. We strongly suspect that, as before, 'they' know exactly what the problem is but are refusing to give us this information. If 'they' were acting in Hari's best interests then this problem would have been investigated and diagnosed a long time ago.

Are 'they' still hoping that Hari will present 'them' with an emergency so that 'they' can continue with 'their' ridiculous little game?

We wonder if 'they' are holding 'their' breath in anticipation! We do so hope that 'they' are getting the required enjoyment from this infantile and pathetic venture!

We believe that 'their' actions are deliberate.
We believe that 'their' actions are discriminatory.
We believe that 'their' actions are despicable.

But so long as 'their' egos are intact and 'their' over-inflated salaries (which would be better spent on patients!) arrive in 'their' bank accounts each month, we don't suppose that 'they' are in the slightest bit bothered!

Back To The Baby Ward - Part One.

2009-04-13T12:31:00.001-07:00

So now let's get back to the historical information.

Having left Bristol Children's Hospital after viral meningitis, it wasn't long before Hari was back there - this time in intensive care. (August 1984.)

Once she was well enough to leave intensive care we found ourselves back on the baby ward- on the same night that Hari's twin sister was also re-admitted. Hari's twin sister appeared to have some kind of virus but the GP was taking no chances, after how ill Hari had been, and had sent her to the hospital.

I have quite a few things to say about our stay on the baby ward on this occasion and it may better to detail them in more than one post.

Let's start with the problem of the 'hospital' clothes.

Once again we had the problem of worn and stained clothes being put out for the twins to wear. They were in the same cubicle together. (Glass walled so it was like sitting in a goldfish bowl!) In each cubicle there was a bin for rubbish and a bin for dirty laundry. Into the laundry bin would go wet towels; sheets that had vomit, urine and faeces on and dirty clothes.

On several occasions I took one look at the stains on the 'clean' clothes and put them straight into the laundry bin - along with the dirty towels and sheets. What always followed next was appalling - if I went off the ward to get a coffee or something to eat - I would return to find that somebody had taken the clothes back out of the laundry bin and left them on the side - expecting me to dress my babies in them. It was bad enough that they had been stained in the first place but to expect my babies to wear them after they had been in contact with vomit urine and faeces was disgusting!

In the end I brought their own clothes in insisting, in defiance of the ward sister, that they wear their own clothes. I may have been breaking her precious rules but they were MY babies, not HERS; I would decide what they wore and ensure that they had clean clothes.

If the clothes had been the only problem it wouldn't have been so bad.

As I had my eldest daughter to look after I couldn't stay at the hospital overnight. I would get there as early as possible in the mornings - usually by 9am. It wasn't unusual for me to arrive to find that at least one of the twins had been sick or a nappy had leaked onto the sheet. On quite a few occasions it was clear that the vomit, urine or faeces had been on the sheets for hours and had simply been ignored.

On one occasion I arrived to find a nurse just tucking Hari back into her cot. The nurse told me that she had just fed her but that she had decided to leave her bath for me as she knew that I would want to do it.

What she didn't say was that Hari was in desperate need of a bath - her nappy was so dirty (and had clearly been like this for a long time) that there was dried faeces all up her back. Yes - a nurse had been tucking her back into her cot in this state without making any attempt to clean her up or even change her nappy!

Standards were not what we were entitled to expect!

Back To The Baby Ward - Part Two.

2009-04-13T09:35:00.000-07:00

During this admission I once again found myself being harassed by a medical social worker. This one would turn up regularly and after a while I became concerned about her level of interest.

There was a supervised playroom at the hospital and my eldest daughter loved to go down there for a couple of hours. When I took her down there, or went to collect her, I would usually take one of the twins with me - it was a break from the cubicle for them (Those cubicles were totally unsuitable environments for babies!) and I would show them the pictures on the walls of the corridors as we went. (As you do!)

All of a sudden I was informed that I was not to take Hari off the ward again and that if I did so 'they' would apply to the courts for a place of safety order.

I was shocked!

I had done nothing wrong at all. I had simply walked down the corridor with my baby - is that a crime? Other parents would take their babies off the ward so I couldn't understand why I was being told not to - especially as the threat did not extend to Hari's twin sister. What possible reason was there to take this stance? Naturally I asked for an explanation as to why this had been decided but everybody involved refused to explain. Apparently it was perfectly acceptable to threaten parents in this way without giving them any explanation of exactly what they were being accused of!

To this day I have never received either an explanation or an apology for this ridiculous and unjustified threat.

Back To The Baby Ward - Part Three.

2009-04-13T09:30:00.001-07:00

Hari's feeding problems were worse than before whilst she was recovering.

She was generally reluctant to feed and would only take part of each feed.

The system in use on the ward was to spoon feed the rest of the feed once the baby stopped drinking from the bottle.

The problem with this was that Hari would immediately spit out any milk that was spooned into her mouth - so she was not actually getting the amount of milk that she needed.

This was complicated by the fact that the nurses would write the full amount on the feed chart - leading to the illusion that Hari had been fed sufficient milk.

I requested that the nurses should include on the feed chart how much milk Hari had taken from the bottle and how much she had been fed by spoon - at least that way we would have an idea of how much she was actually swallowing.

This request was frowned upon - but I stood my ground and they did eventually agree to record her feeds in this way.

I should mention that I was able to get more success with getting Hari to feed than the nurses did.

So it came as a bit of a surprise to be told that 'they' had held a meeting and decided that once we went home it was being arranged for care assistants to come to the house, three or four times a day, in order to feed Hari.

Now I saw some problems with this - not least that 'they' had had the cheek to hold a meeting without informing or including me - and to make such decisions without consulting me at all!

I pointed out that I was having more success than the nurses in feeding Hari but was told that I had to accept this intrusion in our lives.

I also pointed out that there would be times when we would not be home when Hari's feeds were due - especially as she was on three hourly feeds - and that I would need to feed her wherever we were. I was told that I would HAVE to be home for all her feeds - which(taking winding and changing into account) would limit us to being away from home for no more than two to two and a half hours at any one time.

So - I was being banned from feeding my own baby during the day even though I was the only one who had so far been able to get her to drink a reasonable amount!

I told them I would think about it and agreed for these care assistants to come and meet us at the hospital.

I really wasn't happy about the intrusive and restrictive nature of this whole plan and decided to speak to our GP about it.

I phoned the surgery and spoke to Annette Bradley. I explained the problems with this plan and asked if she could speak to the hospital and persuade them to drop the plan.

She responded by telling me to pretend to go along with it and then once we were home to refuse to accept it. She suggested that when these women arrived at our home I should just say 'no thank you' and shut the door again!

Now I really didn't think this was the best way to deal with things so I decided to let the hospital know, before Hari was discharged, that I didn't agree with their plan and would not accept it.

They were not amused!

TOUGH!!!!!!!!!

The Great Escape!

2009-04-13T09:25:00.001-07:00

Hari's stay on the baby ward had been problematic to say the least.

There had been some major concerns about the standard of care available there.

Hari had been left on sheets she had vomited on.

Hari had been left on sheets that were wet and dirty when nappies had leaked.

Hari had been left in dirty nappies for long periods of time.

Hari's records had been incorrect as the feeds had been repeatedly recorded as having been given in full when, in reality, she had only swallowed half the required amount.

Hari had been expected to wear dirty and stained clothes.

So all that neglect was going on and I was threatened with a place of safety order for daring to walk down the corridor with MY baby!!!!

I arrived on the ward one morning to discover the final straw!

When I arrived on the ward on this particular morning I found Hari screaming and extremely distressed. The first thing I did was to check her feed chart to see if she was due for a feed. According to the chart she was nearly three hours overdue for a feed but I realised that a nurse may simply have forgotten to fill in the chart after the last feed.

So I went to look for a nurse to check this out.

That was when I found the next problem - there were NO nurses on the ward!

In fact I was the only adult on the ward. There were no other parents present and no staff at all!

I checked the staff room and there was nobody there. Then I went along the corridor to the milk kitchen but there was nobody there. I went back to the ward and there was still no staff or parents present.

Just me and a whole ward of babies -most of the babies were screaming and I seriously contemplated joining them!!!!!!!

Now just imagine the lay-out of the ward -

You entered through a set of unlocked double doors and were faced with a corridor that was lined with glass walled cubicles. At the far end of the corridor there was a door which led outside to the garden. From the garden it was relatively easy to reach the road. ANYBODY could have walked onto that ward and left, unnoticed, through the garden door, with as many babies as they chose to take with them!

But for the next twenty minutes it was just me and the babies! I went back and forth between Hari and other babies - popping dummies back into mouths and trying to get some of them to stop crying. Believe me this was a hanging offence - you were definitely not supposed to touch other babies!!!!! One little boy would not respond to his dummy at all -just spat it out again and continued screaming - but I didn't dare to pick him up and give him a cuddle - they'd have hung me twice for that!!!!!

Eventually a nurse appeared and I told her how distressed this little boy was and asked if she knew which nurse was looking after Hari that day, as she may have missed a feed. She said she didn't know but that she would find out.

She came back and said 'oh it's me, I didn't realise - but it doesn't matter'!!!!!!!!!!!!!

Well excuse me but it damn well did matter!

Hari had been left totally unattended for almost three hours at least! She had not been given a feed that was almost three hours overdue and this stupid woman was telling me that it didn't matter!

I decided that Hari was not staying on that ward for a moment longer than necessary and asked to speak to the consultant, Peter Fleming. I was going to ask him to move Hari to another ward.

I waited on the ward until lunchtime. He did not come to speak to us. For the majority of the morning I was in the cubicle with Hari, when I left the cubicle I went out through the garden door for a smoke but was able to see the other entrance to the ward from there. I did not see him arrive on the ward.

I needed to get some lunch, so told the nurse I was going to the canteen but that if the consultant arrived I would come back immediately if she phoned the canteen to say he was there. She agreed that she would do this.

When I got to the canteen the consultant was there so I politely asked him if he had got the message that I wanted to speak to him. (After all messages don't always reach the recipient.) He said that he had received the message and had been to the ward but that I hadn't been there.

Remember that apart from going for a smoke just outside the garden door, I had been there all morning - and whilst being on the garden side of the door I had a clear view of the other entrance to the ward and had not seen the consultant arrive. Also remember that the nurse I had spoken to before going to the canteen had said nothing about the consultant having already been to the ward.

I decided that the only solution was to take Hari home - so when I got back to the ward I told them that this was my intention.

Ward staff were also now insisting that the consultant had been to the ward during the morning but that I had not been there.

So there were two possibilities - either he was lying and they were also lying to back him up, or he had come to the ward when I was in Hari's cubicle but had been lied to by staff who had told him that I was not there when I was.

.

Either way Hari and her twin sister were going home - whether 'they' liked it or not!

It seemed that they didn't like it and the most ridiculous situation unfolded.

The cubicle was next to the office and there was glass between the two rooms - I could see straight into the office.

Nurses gathered in the office.

They were joined by some lesser god.

They were joined by the medical social worker.

They were joined by the physiotherapist.(Poor Jim - none of this was his fault!)

There they all were in a little huddle - leaning against the desk and other office furniture - arms folded - barely speaking - they really didn't know what to do! They knew that the events of the morning put them firmly in the wrong.

Eventually a nurse and lesser god came into the cubicle and asked me to sign a form saying I was taking responsibility for taking Hari home. At first I refused to sign it and told them that I had no choice but the take her home after she had been neglected there once too often. I did offer to sign the form in the end but told them that I would write on the form the reasons for taking her home - at that point they refused to give me the form to sign!!!!!!!!!!!!!!

So we left anyway - with the knowledge that if Hari needed to be admitted again there was no way that I would allow her to be admitted to that ward.

What A Fun Way To Waste An Afternoon!

2009-04-13T09:21:00.001-07:00

Hari continued to have contact with hospitals through weekly physio sessions and regular outpatients appointments at St. Michael's hospital. (BMH)

The outpatients appointments were a nightmare!

Now I realise that clinics can run late for a variety of reasons but this should never be because people who have later appointments arrive early and get seen almost immediately!

Because I had to get back in time for my eldest daughter coming home from nursery, I always booked an appointment that was near to the clinic start time - not that this was a great deal of use!

The clinic was chaotic and disorganised. The doctor appeared to see patients in whatever order he chose. Patients with appointments at the end of the clinic would arrive early - knowing that they would be seen very quickly - even though that meant that people with earlier appointments would have to wait longer. Indeed we would arrive and wait - aware that the same doctor was seeing patients who's appointment was two and a half hours after ours! This was a practice that was unacceptable both for the patients and the nurses running the clinics. We believe that this practice has now been stopped -but maybe you know different!

It wasn't unusual for us to have to leave without being seen, in order to get home in time for my eldest daughter. When you are forced to leave without being seen it was common practice for them to record in the notes the term 'DNA' - nothing to do with genetics - it stands for 'did not attend' - they didn't seem to realise the difference between not arriving and arriving but not being seen due to the chaotic organisation of their systems!

Finally the doctor seemed to realise that his method of sticking to appointment order wasn't working and he began to see us relatively close to the appointment time. I hope that he was doing this for other people too!

A Little Upside Down Reading !

2009-04-13T09:16:00.001-07:00

During the outpatients appointments Hari would be examined but I always felt that I was not being given a great deal of information.

On one occasion Peter Fleming did say that Hari had brain damage - this was the full extent of the information he gave me on this subject. 'Brain damage' is a catch all phrase that can mean very little and cover a wide range of problems.

I only learnt the full and official diagnosis by being a bit crafty!

At that time medical notes at the GP surgery were not on computer but on paper. I had to take Hari to the GP for something and Annette Bradley pulled the papers out of the envelope style file. Whilst she was busy writing something in the notes I was busy reading upside down - the top piece of paper in the pile she had removed was a letter from Peter Fleming.

I read the fact that Hari had 'spastic quadriplegia' (a form of cerebral palsy) - this was the first time I had encountered this term.

So my next task was to investigate the exact meaning of the term 'spastic quadriplegia' - in order to ascertain the facts that nobody had bothered to tell me.

It would not be the last time that I had to research the facts for myself and this was before the widespread use of the Internet made such research easy! Back then the only way to do this was to traipse around libraries and bookshops (with three children in tow)!

As if I didn't have enough to do already!

The Doctor Is Wrong - And Wrong Again!

2009-04-13T09:13:00.001-07:00

The difference in birth weight between Hari and her twin sister was exactly two pounds. Hari was the smallest at three pounds five ounces. She was very slow to gain weight and I could see no obvious reason for this. I was convinced that there had to be a medical reason for her slow weight gain and growth.

Early on various doctors, including Peter Fleming, repeatedly told me that the smaller twin usually catches up with the larger one by their first birthday and that Hari was expected to do this. They always added that if she didn't catch up by the one year milestone they would investigate to ascertain a medical reason for this.

I was not convinced that she would catch up as her growth rate was so slow. Foolishly I actually believed the doctors when they promised that they would investigate this when she was one.

So when Hari had an outpatients appointment just before her first birthday I was keen to discuss her continued short stature and low weight. I knew there had to be a medical reason for this and clearly it was in Hari's best interests to have this investigated and diagnosed.

There was also another issue that I was keen to discuss.

When Hari had been on Intensive Care she had experienced some fits, for which she was prescribed Phenobarbitone. I had recently been given a copy of a scientific paper which concluded that this drug should not be given to children due to the various known adverse effects. It also concluded that it should certainly never be given to children with Cerebral Palsy as it hampers development and this is the last thing these children need!

So I raised both issues at the appointment.

Peter Fleming's response, when I showed him the paper on Phenobarbitone and children, was anger that I had gained access to a paper from a medical journal. He demanded to know where I had got it from!

Medical knowledge was still jealously guarded in the early eighties. Information for patients was limited and access to medical journals and libraries was restricted.

These days all you need is Google!

The genie is out of the bottle and it isn't going back in!

I had expected that he would simply take Hari off Phenobarbitone and replace it with another medication. Instead his response was an irate - 'Take her off it if you want -she'll be straight back on it!'

Don't you just love it when they're wrong!

With no official guidance on how to take her off Phenobarbitone I gradually reduced the dose until it was stopped completely. She has never needed it since! She had a few fits some years later, following a car accident (our small car was hit by a very large coach!) but apart from that has been fine - with no need for this medication.

Now as if this request wasn't enough, I then had the audacity to remind him that I had been told that Hari's growth problems would be investigated if she was still small at one year old. (According to her records at the GP surgery Hari was just under nine and a half pounds and her height was also below what was expected.)

This didn't go down too well!

He informed me that it wasn't worth investigating.

Well we all know now that he was wrong about that too!

The Quest Begins!

2009-04-13T09:09:00.001-07:00

Due to Peter Fleming's refusal to investigate any medical reason for Hari's slow growth we went back to the GP and asked to be referred elsewhere.

Annette Bradley decided that the best place to start was with the paediatrician who held clinics at our local hospital, Tim Chambers.

So in June 1985 Hari was seen by Tim Chambers. He decided he would need to observe her as an inpatient for a few weeks and told me that he would arrange this.

After some time I had heard nothing so I telephoned his secretary to enquire about the arrangements for this. She informed me that it was not going to happen and that Tim Chambers was not going to see Hari again!

A somewhat ambiguous letter had been sent to our GP in which Tim Chambers said it was very unlikely that he would turn up anything new. Prior to sending this letter he had seen Hari's notes from Bristol Children's Hospital.

We went back to our GP and she apologised for not telling me that Tim Chambers was not going to see Hari again - she had been under the impression that he had told me this himself. She assured me that had she known he had not told me this then she would certainly have told me.

Interestingly enough a later enquiry resulted in Tim Chambers claiming that : 'his offer to monitor her condition in hospital was not taken up.' In fact the offer to monitor her as an inpatient never materialised - it was never arranged and we were never sent any arrangements for this offer, despite the fact that this is what he had told us would happen. It wasn't until I chased it up with his secretary that I learned that it was not going to happen at all.

So - was this what we were to expect from the NHS? Refusals to investigate and diagnose at every attempt to get Hari's health problems and needs recognised and treated?

It's certainly beginning to sound familiar!

Back To The Future Part Two. The Link Is Still Missing!

2009-04-13T09:05:00.001-07:00

So whilst we've been waiting for buearocratic processes, we received yet another appointment to see the Oracle Lightman.

Remember him?

Mr. Second Opinion.

He was the one who was supposed to diagnose the undiagnosed. (According to all the other doctors and managers involved in this ongoing farce.)

Remember that seeing him is not a transfer of care - we are seeing him solely for a second opinion regarding the undiagnosed problem. (And we have that in writing!)

So when we saw him in Novemeber he told us that he would consult with his colleagues and that we would be hearing from him.

We didn't hold our breath - that would have been fatal!!!!

We heard nothing except for the appointment letter for yesterday. (12th August. 2009)

So after waiting nine months more there had been no activity or contact to arrange investigations and diagnosis.

Yesterday we attended this second appointment for two reasons.

1) To protect ourselves from further harrassment, bullying and false allegations.

2) Because there was always the outside chance that this was the promised contact with regards to diagnosis.

Well - it was only an outside chance!

Apparently he has contacted other people and he is soooooooooooooo dissapointed that they haven't contacted us.

He actually expects us to believe that!

So we have waited patiently for nothing.

Apparently he is going to contact other people regarding the required diagnosis.

Where had we heard that before?

We don't believe it this time either!

There is something that we do believe.

We hold a firm opinion that 'they' all know exactly what the undiagnosed problem is, but 'they' are deliberately refusing to diagnose it for 'their' own unethical reasons.

What we do not understand is how anybody can be so cruel as to deliberately continue this ridiculous farce. Deliberately targetting a defenceless young woman who's only apparent crime is to continue breathing.

The Quest Continues!

2009-04-13T08:59:00.000-07:00

After the farce with Tim Chambers and his refusal to investigate Hari's lack of growth, we had to find another option.

I read an article about a doctor, Michael(GM) Besser, at Barts in London. Our GP agreed to do a referral and Hari was seen at his outpatients clinic. This was a joint clinic with Martin Savage and they seemed to be promising us the earth and more. They were unimpressed with the care Hari had received in Bristol and proposed taking over all her care. The plan they put forward was that they would get her notes from Bristol and then admit her to the Queen Elizabeth children's hospital in Hackney to investigate her problems.

We waited.

And we waited.

Eventually I decided to chase things up and on speaking to Martin Savage realised that he didn't seem so keen now he had 'spoken to Bristol'. However, he did still agree to see Hari and we set off for what turned out to be a six week stay in London.

They ran a series of tests but strangely enough there was one test that they refused to do - being adamant that it couldn't possibly be that.

They told me that the heart surgery she needed would be done before she went home - then changed their minds and refused to do it.

At the end of the admission I was assured that we would be sent a follow up appointment. The appointment was never arranged. Hari was left with no health care besides the GP.

Clearly they didn't want Hari as a patient - well their enthusiasm had dwindled after they 'spoke to Bristol' - so we were not really surprised - we were getting used to being fobbed off by people - and getting the message that people didn't think Hari was worth bothering with.

Seems to be a familiar pattern from some quarters with regards to disabled children.

Plenty more on that subject later!

A Deviation In The Path Of The Quest!

2009-04-13T08:53:00.001-07:00

It was becoming clear that the refusal to diagnose by Bristol would be supported by any other doctor we approached - did misplaced professional loyalty outweigh patient need?

R.I.P. ethics!

Then Hari decided to develop another problem.

For a while she had been getting nose and mouth bleeds for no apparent reason. I had also noticed small pin prick size blood spots appearing beneath unbroken skin. I had mentioned this to the health visitor and she had said it was a heat rash - although I was not totally convinced by this response.

During a physio session in Bristol, Hari developed another mouth bleed with no apparent reason. When I told the physios that this had been happening a lot they agreed with me that the rashes were probably not a heat rash and this needed to be checked out. We drove home (over twenty miles) and went to the GP.

The GP decided that as Hari had been seen in London, he didn't know whether or not he was 'allowed' to send her back to Bristol - he would have to check the rules!!!!! He told us to go home and he would get a message to us.

Within a couple of hours he was on our doorstep instructing me to take Hari to Bristol immediately!

Back we went to Bristol.

Blood tests were done and it was discovered that Hari's platelet levels were drastically low. She was admitted - with good and bad aspects to the admission arrangements.

The good aspect was that she was now too old for the baby ward so we didn't have to face that particular nightmare again! She was admitted to another ward which appeared to be a definite improvement on the baby ward. It was an improvement - but later posts will reveal that it could have improved some more!!!!!!

The bad aspect was that they put Hari straight back under the care of the same consultant we had walked away from when he refused to investigate and diagnose her lack of growth! So, despite raising objections we were lumbered with Peter Fleming again.

I thought that, as we were lumbered with him, he might improve - given a second chance. Maybe he might even realise that he really ought to investigate and diagnose the lack of growth.

I thought wrong!

An Idiopathic Interlude!

2009-04-13T08:49:00.001-07:00

The suspected diagnosis for the low platelets was a condition known as ITP.

After various tests this diagnosis was confirmed.

ITP stands for Idiopathic Thrombocytopenic Purpura.

Roughly translated this means that the rash results from low platelets and they haven't got the foggiest idea why!

Indeed the word 'idiopathic' means 'of unknown origin'. This is fine if a condition officially has 'Idiopathic' in it's title, as it can educate you to the fact that science has yet to discover what the root cause of the problem is - it doesn't mean that they don't know how to treat it.

However - if a doctor uses the word 'Idiopathic' in relation to a problem that doesn't officially have the word 'Idiopathic' attached to it - the best advice is to run like hell - it means he/she really hasn't got the foggiest idea and probably doesn't have the first idea of what he/she is doing!!!!!!

In this instance we would have been well advised to run like hell anyway!!!!!

An Idiopathic Intravenous Infusion!

2009-04-13T08:44:00.001-07:00

The hospital set up a system to monitor Hari's platelet levels and it generally worked well.

Their plan was that on the way to physio sessions we would go to A&E and Hari would have blood taken. By the time the physio session was over the results would be available. If Hari's platelet count was above a certain level then we could just go home, if the platelets were below that level we would have to wait so that Hari could be seen by a doctor. On the occasions when the count was low Hari was usually admitted

Treatment was in the form of an immunoglobulin administered intravenously. It would be administered daily for three days. Hari would have 60 mls of the immunoglobulin on each of the three days.

The product came in 100 ml bottles and any left over had to be kept in a fridge and used within about six hours. Obviously the 'spare' 40mls could not be used for the next day's dose so it had to be discarded.

Or that was the theory!

On one occasion Hari's third dose was due but hadn't been administered before I had to leave the hospital to collect my eldest daughter from school. The nursing staff assured me that the dose would be administered that evening.

When I got to the hospital in the morning it was explained that they had only had 40mls of the immunoglobulin available the previous evening so Hari still needed another 20mls.

The maths wasn't difficult!

The immunoglobulin came in 100 mls bottles - so if they had 40mls available they must have had 60mls available.

Then they admitted that they had used what they said was the 40ml excess from the previous day.

They had no idea at all if their could be any adverse reactions from using the leftovers beyond the stated time limit of six hours - but they had given it to her anyway!

Then I realised the other problem with this action.

On day one the leftover immunoglobulin had been left on the windowsill of the treatment room in full sun - it was not put into the fridge.
On day two the leftover immunoglobulin from day one was still on the windowsill and that day's leftover was thrown into the bin.

So neither of the previous two days' leftover immunoglobulin had even been correctly stored!

They insisted that they had used the leftover from day two - so that would be the one that had been thrown into the bin!!!!!!!! Had they really fished it out of a bin full of used and contaminated dressings etc. before administering it to Hari intravenously? Well they were obviously never going to admit THAT but they insisted that they had used the leftovers from day two (having checked the date on the bottle) and I had witnessed that bottle being thrown into the bin!

Somebody vaguely looked in a book to check for possible adverse reactions but couldn't find anything. They were not exactly keen to explore this avenue and I had to get extremely annoyed before they would take any notice at all - finally a more senior doctor was called in. (This being a Saturday you are supposed to be dead before this happens!!!!!!!!!)

His main concern seemed to be that I should take Hari home immediately and bring her back for the final dose on the Monday.

Did they really think I was stupid?

THEY had put Hari at risk, THEY had no idea of what any possible adverse reactions might be - and THEY wanted her out of the hospital immediately so that if anything did happen they could claim it must be related to events outside the hospital.

If an adverse reaction was to occur I wanted it to happen in the hospital where it could be dealt with immediately - not at home which was over 20 miles from the hospital.

I think they were a little surprised when I refused to take her home!

Fortunately for Hari she didn't experience any noticeable adverse reaction - but that appeared to be more luck than judgement!

On the Monday one of the staff nurses told me she had put in a formal report about this incident - she also told me not to expect them to actually do anything about it - because THEY never do!

Intentional Idiopathy!

2009-04-13T08:40:00.001-07:00

During the various hospital admissions at this time I took every opportunity to raise the issue of Hari's lack of growth. I was convinced that there was a medical reason for this, a medical reason that needed to be diagnosed and treated.

The responses were getting boring!

'It isn't worth investigating'

'It isn't a significant issue'

'You have to accept that she isn't going to grow'

And of course the repeated allegations and insinuations (false!) that I was responsible for her small size due to not feeding her enough!

The whole thing was infuriating - nobody was prepared to listen to my concerns or show any concern for Hari regarding this issue.

Some incidents were truly farcical.

Imagine the scene.......

The consultant, Peter Fleming, orders two junior doctors off the ward for daring to suggest a possible medical explanation for Hari's small size!

The same consultant, Peter Fleming, orders two junior doctors to alter Hari's medical records in order to remove their opinion on the medical reason for her small size!

Excuse me! Isn't that last point totally unprofessional and against all the rules?

Idiotic Little Gods.

2009-04-13T08:36:00.001-07:00

Around this time I decided that, as there was nothing more than repeated refusals to investigate Hari's lack of growth, the best course of action was to make a complaint.

This was before the complaints systems that are currently in place, but I was offered a meeting with Peter Fleming and the hospital manager Marian Stoneham.

At that time the NHS ran along the lines of all doctors being Gods. (Even when they were total shits who were a danger to their patients!) Managers had no control at all over the actions of doctors who were failing their patients - indeed this was proved to be all too much the case in Bristol when the failings of the cardiac team came to light!

The meeting was a total waste of time. Peter Fleming refused to admit that there was a medical reason for Hari's lack of growth or to instigate any tests or investigations to discover the cause. Marian Stoneham appeared to have no power to address to problem at all - doctors were gods and could not be ordered by managers to do their jobs properly!

Sometimes you have to wonder if these people would accept this kind of situation for members of their own family - actually I don't wonder about it - I know that they wouldn't! So why do they expect other people to accept this type of appalling, discriminatory and deliberately negligent treatment.

What I do wonder - is how they sleep at night!

A Little Future Planning And Support - Or Not!

2009-04-13T08:31:00.001-07:00

Hari's general health care was still something of an issue. There had been no follow up from the team in London - although this had been promised. We were in a sort of limbo - the ITP was monitored on a casual basis but there was no formal planned care at all.

During one of Hari's brief admissions associated with the ITP, the ward sister spoke to me about outpatients follow up. She wanted to know if we would turn up to appointments with Peter Fleming if these were arranged. She seemed to think that we had not turned up to his appointments in the past.

In fact this had not been the case. We had always turned up but had frequently had to leave without being seen, as his outpatients system didn't involve seeing people in order of appointment time - this resulted in people with later appointments being seen first and people with earlier appointments having to wait hours. Often the wait was so long that we had to leave in order to be home in time for my eldest daughter leaving nursery (nursery had an organised 'school run' so that she was brought home on their transport at a certain time) - did he really expect me to leave a pre-school child waiting on the doorstep - maybe 'latch key kids' were in vogue in his social circles!!!!!!!

Additionally we were unimpressed with the attitude we had encountered in Bristol regarding Hari's future - doctors didn't seem to think she had one. Apparently my expectations of any possible progress were too high and I didn't understand that she was worthless with no prospects of ever thinking for herself or achieving anything in life at all. Indeed, in his letters to our GP, Peter Fleming frequently referred to Hari as having a 'poor long-term outlook'.

Don't you just love it when- they're wrong!

So - the outpatients problem was clearly not one of us not turning up, but more about whether or not the direction of the doctors' focus was appropriate or useful for Hari.

The ward sister told me that there was no point in giving us an outpatients appointment if we were not going to turn up - but that they would organise an appointment if we would turn up.

I suggested that if Peter Fleming intended to use words like 'future' and 'potential' in reference to Hari then it would be worth going to appointments, but that if he didn't think she had any future or potential then appointments would be a waste of everybody's time. The point being, that Hari needed doctors who would not discriminate against her because of her disability and who would be supportive in providing the care and treatment she needed in order to acheive her full potential.

They NEVER arranged the outpatients appointment!!!!!

Now why didn't that surprise us!!!

Perceptions And Pre-conceptions.

2009-04-13T08:26:00.001-07:00

Now appears to be an appropriate moment to mention the perceptions and pre-conceptions that effect the health care that is offered.

Peter Fleming frequently referred to Hari, in letters to our GP, as 'this unfortunate little girl'.
We found this to be a really offensive term - maybe it reflected his perception of anyone with a disability. Did he have a pre-conception of disabled people as 'unfortunate'? If so then this would clearly effect his attitude towards Hari and lead to discrimination. (Apparently even unintentional discrimination is discrimination - but I don't intend to judge on intention here!) If the perception of somebody as 'unfortunate' blocks the perceiver from seeing the individual, with all their associated talents and abilities, then the perceiver is unlikely to be able to see beyond the disability to the whole person. When this happens within medicine, discrimination, unintentional or otherwise, will adversely effect the health care of the disabled patient.

So, describing Hari as 'unfortunate' discriminates against her from the start.

Another doctor, who we only encountered once, described Hari in a letter to our GP as 'this lovely little girl' - we suspect this is a term he would have used for disabled and able-bodied patients alike. (Just so long as they were lovely little girls!) Clearly his attitude was not clouded by pre-conceptions of disability that lead to discrimination.

Hari and I know which term of reference we prefer!!!!!

Sad Little Lives.

2009-04-13T08:22:00.001-07:00

Whilst Hari was on the ward during admissions I became aware of some strange and morally questionable attitudes, in the hospital, towards disabled children.

On numerous occasions nurses told me that disabled children should be left to die, that it wasn't right to treat them for illnesses.

Usually they appeared to be telling me this in a very natural way - as if it was the sort of thing they said to parents of non-disabled children all the time. They would also say these things in front of Hari and my other children! They would suddenly look shocked - realising that they were talking to the mother of a disabled patient and start backtracking - 'Oh we don't mean Hari' - damn right they meant Hari too - but I took every opportunity to assure them that anybody taking this stance with Hari would swiftly regret it!!!!!!

On one occasion I was told that it wasn't fair on the nurses to keep a particular child alive! Now excuse me but nurses are paid to do a job and if they don't like the fact that a child they are expected to treat is disabled then they are in the wrong job! If they think this way then maybe they should be working somewhere else - for the protection of the patients!

On another occasion when Hari was admitted we were arriving on the ward when I stopped in my tracks at the end of a bed. Lying in the bed, propped up on pillows, was a disabled boy who was very blue and initially I thought he was dead - then I saw him take a very shallow breath. Gradually it became apparent that whatever was wrong with this little boy - he was not being treated. Nurses didn't go anywhere near him. It was clear that he was being left to die. It wasn't long before I had seen enough. I was about to go to the Manager's office and demand some action when a flurry of activity began around his bed. Within minutes a drip was put up and he was given oxygen. I later found out that one of the staff from the home this boy lived in had risked her job to contact his grandparents and tell them what was happening. This had resulted in the hospital having to treat what had only been a chest infection - potentially fatal but easily treatable - and we can be certain that treatment would not have been withheld if he hadn't been disabled.

I remember a senior nurse on the ward being furious that a particular patient was admitted. She stomped around and told anyone who would listen that he should be left to die - that it was a waste of the nurses' time having to look after him.

I was informed that the same nurse had told a foster mother that the disabled child she fostered and loved should be left to die.

And they actually expected us to trust them!!!!!!!

Those who hold these attitudes have no business working in health care. If they cannot see that disabled children's lives are equal in worth to any other life then they have no right to masquerade as members of what are supposed to be caring professions. It is not their place to judge on quality of life. Hari has a great quality of life - far better than some of the sad little lives that are led by the people who would rather she had died.

Look After The Pennies And The Patients Can Look After Themselves!

2009-04-13T08:19:00.001-07:00

So there we were. Mid 1980s - Hari was about two, not growing as she should do and with no diagnosis for that. There were constant implications and allegations that I didn't feed her enough and an attitude from some hospital staff that disabled children should be left to die. I was learning fast - and aware that if Hari was ever going to get the health care she needed I was the only one who was going to be prepared to fight her corner.

The situation with the ITP was ongoing. The treatment used was following a predicted path of being less effective as time went on. Eventually it was stopped completely - although I felt it was stopped too soon.

The system they had devised for keeping track of Hari's platelet levels had worked well. On the way to physio each week would go to A&E, the blood test would be done and the results were ready by the time we left physio. Even without the treatment the tests were beneficial to Hari; if her levels were low then at least I was aware of it and could be extra careful with her to avoid bruising and bleeding.

Then they decided that this was about to change - without consulting me at all.

As usual the blood was taken before physio and we returned to A&E afterwards to get the results. The nurse who spoke to me was usually lively and engaged in a little bit of banter. On this last occasion she was rude and abrupt and refused to tell me the results! She announced that they had the results and that the doctor (a lesser god) was certainly not going to tell me what they were!

I was shocked at her attitude as it was unacceptable and unlike her - but I realised that she was acting on instructions and very uncomfortable about this situation.

I went back to physio and used one of their phones to bleep the doctor concerned - cheeky I know but I was not simply going to walk away. I needed to know what was going on and Hari needed me to do this.

When this lesser god answered his bleep he was equally rude and initially refused to tell me the result. After a little persuasion he did reveal the result but what followed was unbelievable. He announced that there would be no more blood tests and told me that I was abusing the lab service!

Now Excuse Me!

All I had done was follow instructions from the medical team - I had been told to attend with Hari for the blood tests and I had done so. Clearly I was not abusing the lab service at all - I was simply doing what I had been told to do - indeed if I hadn't done so I would have been criticised for that.

It soon transpired that at the end of the previous week there had been a multi-department meeting to find ways of saving money as they were way above budget - Hari was simply a budget cut. Despite the fact that her platelet levels could become dangerously low and despite the fact that her disability made it difficult to spot the symptoms until they were very low (she did not move around like children her age so warning bruising at low but acceptable levels was unlikely), Hari's needs were to be ignored in order to save a few bob on the budget.

Nothing new there then!

The Curious Incident Of The Referral Refusal.

2009-04-13T08:15:00.001-07:00

So there we were with yet another example of Hari not getting the standard of health care she needed. There seemed to be a blinkered approach that denied Hari appropriate care at every opportunity - based on discrimination, budgets or a mixture of both.

This even happened when it wouldn't cost the NHS a penny!

One event that had been both surprising and shocking had occurred in relation to an opportunity that couldn't be offered by the NHS.

At that time MRI scanners were relatively new and the general attitude was that the NHS would not be able to afford to install or run them.

Hari had the opportunity to have a brain scan, in an MRI scanner, at a clinic that was not part of the NHS. The scan would not have cost the NHS any money but due to legal technicalities the clinic required a written referral from an existing NHS consultant.

The scan would obviously be beneficial to Hari as it would give the clearest picture possible of her brain and the damage involved. The scan images would have been made available to any doctors involved in her care, enabling them to have clearer information about Hari and to maximise the efficiency of any treatment or care they could offer in relation to the brain damage.

The clinic wrote to Peter Fleming asking him to make the written referral.

He refused!

This is something we have never understood. This facility was available to Hari and the NHS would not have to carry the cost. But for some obscure reason Hari was prevented from taking up this opportunity by Peter Fleming.

This refusal to make the written referral is completely inexplicable - unless they knew something that might show up on the scan - which they didn't want us to know about!

Unprofessional Priorities!

2009-04-13T08:12:00.001-07:00

A retrospective view at that point sums up the situation we had arrived at.

The whole attitude around Hari and her health care was totally unsatisfactory.

It was really strange - obvious health concerns were either ignored completely or plans were changed with no attempt to consult us about it.

It was as if Hari was the property of the hospital and THEY would decree what should happen to her - which with their attitude regarding the worth of disabled children was quite a scary prospect!

Hari had, and has, as much right as the next person to a high standard of health care - but this fact seemed to have escaped their notice!

Thinking back to when she was in the Queen Elizabeth Hospital in London, there was an incident one night that served as a warning of the level of control these people believed that they should have over her life. Late one evening I was trying to get to sleep on the regulation mattress on the floor beside Hari's bed, when the door opened slightly. One of the senior lesser Gods was leading a troupe of junior lesser gods on a late round - he decided not to drag them all into the room as he thought I was asleep. He then proceeded to explain Hari's 'situation' to them. Had he realised that I was awake he may have been a little less vociferous in his tutition!

Apparently they had decided that they were simply doing what was necessary to take the same stance as Bristol! They had NO intention of identifying the cause of Hari's failure to grow - just to go through the motions, pretending to make some effort, their only real intention was to back up the various gods in Bristol.

Misplaced professional loyalty was obviously far more important than the needs of the patient!

Nice to see they'd planned their priorities with such care!

Mandatory Maladies, Medicine And Maths!

2009-04-13T08:07:00.001-07:00

The last post set me thinking a little more about the attitudes we encountered at that time.

I think possibly one of the strangest ones was in regard to Hari's sight and hearing.

Now I can understand a medical attitude that considers the possibility of sight and hearing problems being associated with the brain damage that causes cerebral palsy - what I don't understand was the insistence that Hari MUST have sight and hearing problems.

I was around Hari 24/7 and whilst I couldn't say she had absolutely perfect sight and hearing I was aware that she certainly could see and hear - and believe me I was chastised by the medical profession for saying so!

There was this insistence that she must be blind and deaf - from people who were too wrapped up in their own self importance to notice her reacting to visual and aural stimuli.

I found it unbelievable that the same people who refused to deal with obvious health problems were so keen to add non-existent problems to the list!

Hari had cerebral palsy and was expected to conform to the rules they had created for this particular disability - well Hari was not about to live down to their expectations!

Hari had been sent for a hearing test and it was not an experience we would ever want to repeat!

The system for these tests was for all the babies to attend at the same time. They would all be given a sedative and would be tested, in turn, once they fell asleep. First to fall asleep would be the first to be tested and so on. Once asleep, electrodes would be attached to the baby's head to record their reactions to sounds.

I had concerns about Hari and the sedative. It was administered orally and I knew from experience that orally administered medicines could take a very long time to work on Hari - I anticipated that she would still be wide awake when all the staff were going home! So I mentioned this to the nurse and queried whether or not the sedative could be given as an injection - the answer was no - but they couldn't say I hadn't warned them!

Hari was weighed (in pounds) and the nurse converted the imperial weight to metric in order to calculate the dose of the sedative. (At that point the metric weight meant nothing to me!)

The session dragged on, one by one the various babies fell asleep - except Hari!

Eventually she appeared to be a bit drowsy and having a sneaky doze - but she was not really sleeping deeply enough for the test to work without waking her. Nevertheless the electrodes were attached to her head as she alternatively woke up and dozed off. It was clear that she was never going to be asleep deeply enough. We had been there for hours, I had warned them that the sedative wouldn't work in time. This test was never going to be successful. I gently removed the electrodes and we left - Hari gave up on dozing and stayed awake for hours!

Later that evening the sedative finally worked properly and Hari slept - and slept - and slept. I began to get a little concerned about how long she was sleeping for and tried to wake her up. She would not wake up at all. It was then that I began to have doubts about the accuracy of the weight conversion from pounds to kilograms prior to the dosage calculation. I knew the metric weight that had been used for the dosage calculation and found a book with a metric/imperial conversion chart.

So much for that nurse's maths!

She had completely miscalculated the metric weight and so had wildly overdosed Hari on the sedative!

I still couldn't wake Hari up so contacted the on call GP.

The response I got was that it would be fine and I was apparently supposed to reassured by the fact that she used this medicine for her son when he wouldn't sleep!

Well I wasn't reassured !

I spent most of that night watching Hari and trying, at intervals, to wake her up. Eventually she did wake up - but it was to be about three weeks before she recovered from the after effects of this overdose sufficiently to be fully aware of what was going on around her.

Well that was the non-existent hearing problem dealt with - we'll get to the non-existent sight problem in a later post.

How To Ditch Your Doctor - In One Easy Lesson!

2009-04-13T08:04:00.000-07:00

So by the age of two Hari appeared to be in a no win situation with regards to health care.

She had been refused diagnosis regarding her lack of growth.

Outpatients follow up was not arranged - we had agreed to attend if 'potential' and 'future' entered the vocabulary Peter Fleming used in relation to Hari but no appointments were offered!

Non-existent problems such as sight and hearing problems were being attributed to her - simply because she had cerebral palsy.

She was blocked from getting an MRI brain scan even though it wouldn't cost the NHS a penny and would be beneficial to her care.

And she was being refused further monitoring of her platelet levels in connection with the ITP.

Enough was enough!

When Hari had been put back under the care of Peter Fleming, at the point when the ITP was diagnosed, I had some serious reservations. However, I considered that maybe things might be better this time round, so had been prepared to offer him a second chance.

That was clearly a mistake!

The only sensible way forward for Hari was to ditch Peter Fleming again, so I contacted the general office at the hospital and requested that her care be transferred to another doctor. I was given the choice between two consultants and with some guidance from staff decided that David Baum was probably the best option.

At first we were expected to wait whilst letters were written between the two doctors - but knowing how long it can take for letters to be written and typed I decided that this was not a brilliant idea at all! So the transfer was arranged quite rapidly and Hari's care was transferred to David Baum.

At a later point I discovered that many staff at the hospital had gained some enjoyment from this event. It was with great hilarity that they shared jokes about the fact that I had - 'sacked Peter Fleming twice!' - and it wasn't me they were laughing at!

The Baum Years. Part One.

2009-04-12T17:19:00.001-07:00

Never speak ill of the dead!

However, I will speak the truth - which is no more or less than David Baum would have expected, wanted or appreciated.

David Baum became Hari's consultant when it had become clear that remaining under the care of Peter Fleming was not in Hari's best interests.

So the Baum years began on a better footing than we had previously experienced. David Baum appeared to have qualities far in excess of those we had previously encountered. He listened calmly to concerns and did not have the pompous, egotistical and dismissive attitude that other doctors had displayed.

I felt that Hari had better opportunities and respect as a human being than had previously been afforded to her.

The regular screening of her platelet levels was still not available - but David Baum assured me that the levels would be checked if there was any cause for concern. He listened to my concerns about her lack of growth and decided to contact the Queen Elizabeth Hospital for children in London to get some details of her care there. He commented that the consultant there, Martin Savage, was a friend of his. Maybe we should have taken a little warning from this immediately - although it was a fact filed for future reference!

Overall I was a little more relaxed about Hari's standard of health care. David Baum continued as her consultant for some years - the Baum years will expand throughout the blog!

Pretentious Priorities Part One.

2009-04-12T17:13:00.001-07:00

Life ambled on and we had the usual round of outpatients appointments etc.

In December of 1987, when Hari was three and a half we attended for an outpatients appointment but the wait was so long we had to leave without being seen. Hari was well at the time so a rearranged date for the appointment would be no problem.

Before the appointment was rearranged Hari was taken ill suddenly and went by ambulance to our local A&E.

There they were pretty clear about their opinion that she had had a bleed in her brain and they were very concerned that she should be treated in a paediatric intensive care unit. They told me that the intensive care unit at Bristol Children's Hospital was full but that Hari would be transferred there first, whilst they tried to locate a suitable bed for her at another hospital. They warned me that she was unlikely to be in Bristol for long and that as she was being taken by ambulance it was likely that she would have been moved again by the time I got there in the car. I would have to go to Bristol to find out where she had been transferred to and then follow on from there.

When I got to Bristol Hari was still in the A&E department there. It was explained to me that 'as it was Hari' they were happy to try and manage her on an ordinary ward. They recognised that she needed intensive care but were keen to keep her in Bristol rather than send her somewhere where the staff didn't know her.

Very laudable - well not when you work out the truth!

No official diagnosis of this event was made in Bristol. Indeed no attempt was made to verify the diagnosis from our local A&E. With a suspected bleed in her brain you would have expected Hari to have some kind of brain scan - but this never happened.

I soon realised that the real reason for not transferring Hari to a hospital with an available intensive care bed was that they didn't want the diagnosis from our local A&E confirmed. They didn't want to have an official diagnosis of bleeding in the brain so soon after they had stopped the routine checks on Hari's platelet levels.

So to protect themselves the decision was made to place Hari at further risk by preventing her from getting the level of care she needed.

There seemed to be a definite pattern emerging with priorities!

Pretentious Priorities Part Two.

2009-04-12T17:10:00.001-07:00

When Hari had been admitted on this occasion they had found it difficult to site the drip when she was in A&E. They had to resort to siting the drip in her neck but assured me that this would be moved within a couple of days.

It didn't happen!

Siting a drip in the neck is extremely uncomfortable for the patient and makes movement of any kind painful. It was impossible to do anything with Hari except the essentials whilst the drip was in her neck. I repeatedly complained to the nurses about the fact that the drip hadn't been re-sited but nothing was done. Hari spent Christmas lying in her bed, with the drip in her neck, unable to be moved more than the bare minimum - this was so cruel when the drip could have been re-sited within days of her admission.

Eventually matters came to a head. The doctors decided that they wanted Hari to start eating again and ignored my requests for them to move the drip first as the movements required for swallowing would be so painful for her with the drip still sited in her neck. I pointed out that there was more chance of her being able to eat if the drip was moved. They refused! They decided that the drip could be moved if she started eating! It was as if moving the drip was being used as some kind of bribe to make Hari eat. If she ate they would move the drip - if she didn't it would stay where it was. They appeared to lack the intelligence to realise that she COULDN'T physically eat until the drip was moved!

Enough was enough - once again!!!

I was furious and informed the nurses that I was going for a coffee (and a smoke!) and that if the drip was still in Hari's neck when I came back that I would remove it myself!

Within minutes a lesser god came to find me in the parents room. This lesser god was Marilyn - shame I can't remember the rest of her name - it may come to me at a later date! Did Marilyn come to tell me that she was about to re-site the drip? She did not. She flounced into the room and, in front of numerous other horrified and shocked parents, proceeded to harangue me about the level of Hari's health on admission! She made false allegations about the level of care I gave Hari and told me that she would report me to the police if I removed the drip!

Well this sort of attitude was inevitable - remember that the last post details the errors of the hospital that were actually involved in Hari's admission - first rule of defence for staff was attack - blame the parents to protect the errant doctors!

I made it clear exactly what I thought of her attitude and informed the ward staff that she was to go nowhere near Hari.

Shortly after this David Baum came to the ward and agreed that the drip could be removed.
He also said that Marilyn would do this - she wasn't actually foolish enough to show her face and a different lesser god removed the drip.

Hari was clearly relieved! At last she could move properly without the drip site causing pain and was more than happy to start eating again. Without the drip in her neck she began to improve generally and was clearly much more comfortable. The annoying thing is that this could have happened so much sooner - if they had bothered to listen to my repeated requests for the drip to be moved as they had promised. Their actions in failing to do so were cruel, unfeeling and detrimental to Hari.

David Baum, to his credit, whilst not actually apologising for this fiasco, did state that I had clearly been right about this.

Marilyn? Well I heard tell that she went to Australia - Australia is welcome to her - although I have always been of the opinion that she hadn't travelled far enough away for our liking!!!

Pretentious Priorities Part Three.

2009-04-12T17:07:00.001-07:00

During this admission we experienced yet another strange episode with regard to attitudes from the medical staff.

There is generally a certain arrogance from registrars - maybe because they let the slight elevation from bottom of the **** pile go to their heads!

Early on during the admission Alan Emond arrived at Hari's bed and proceeded to harangue me about the fact that we had not waited the full three and a half hours to be seen at the recent outpatient appointment. His attitude was that this was somehow connected with the admission and he told me that if we had waited (even longer than we had done - and that was more than long enough!) to be seen, then this latest admission would have been avoided. So according to Alan Emond it was my fault that Hari had become so ill, so suddenly - the pattern was continuing!

I laughed at him and informed him that as she had been so well prior to this sudden illness there was no way that David Baum would have been able to predict this illness just from seeing her in outpatients.

I laughed even louder when David Baum arrived on the ward and apologised for having made us wait so long at the outpatients appointment! Clearly he didn't share the opinion of his registrar!

A Fountain (Or A Metric Measure) Of Laughter!

2009-04-12T17:02:00.001-07:00

Whilst we're on the subject of Alan Emond (and we are!) - there was another incident that caused great hilarity.

Hari was still not growing as she should have done and the game of accusing me of not feeding her enough, instead of taking the trouble to diagnose what was clearly a medical problem, continued.

During one admission Alan Emond's attitude centred around Hari's fluid intake and he insisted that she should drink a daily amount that was far more than she could reasonably be expected to manage. Even the Sister on the ward agreed that it was ridiculous to expect somebody so small to drink that much - and that particular Sister was not renowned for disagreeing with doctors!

When Hari was discharged Alan Emond gave me strict instructions that if Hari did not drink this ludicrous amount over twenty-four hours I should bring her to A&E as he would want to see her. I did point out to him that this would mean bringing her to A&E every day but he refused to listen. The nurses shared the opinion that, under these instructions, we would need to attend every day as he was expecting her to drink far too much.

You know what happened next!

The very next day we duly attended at A&E, over twenty miles from home, as Hari had not drunk as much as Alan Emond demanded!

I explained the situation to the nurse who came to the desk and she duly bleeped Alan Emond.

When he answered the bleep the nurse explained that Hari had not drunk the required amount and he actually asked why we were there! The nurse explained again that he had told us to attend if Hari did not drink the amount he demanded.

Did he come down to A&E to see Hari?

He did not!

Did he send a lesser god to A&E to see Hari?

He did not!

He told the nurse that he didn't want to see her and that we needn't attend again regarding Hari's fluid intake!

No word of apology, no explanation...

no nothing!

Still - it kept us and the nurses laughing for some time!

Labels, Diagnosis and Deceit!

2009-04-12T16:59:00.001-07:00

Whilst we're still on the subject of Alan Emond (and we are!) we'll do a little time travelling and leap forward a while to focus on a very strange event.

Being disabled Hari naturally came up against the idiots in the local authority regarding education. Their stance seemed to be that Hari wasn't worth educating, on account of needing a wheelchair, and the issues surrounding this became central in our lives.

Those we dealt with in the NHS made ridiculous pretences at being supportive but in reality did nothing to support Hari's right to education - indeed they mostly caused even more problems on this front.

The post arrived one morning and an unexpected letter announced that Hari had an appointment for 'assessment' at a centre attached to a hospital in London.

We had never heard of this place before and nobody had told us that a referral was being made so we had no idea what the purpose of this appointment was.

So I telephoned the centre to enquire why we had been sent this appointment out of the blue.

The woman I spoke to during this call was very helpful and explained that Hari had been referred by Alan Emond for assessment with regard to education. She kindly read the referral letter to me over the phone (we later acquired a written copy) and the content was extremely worrying.

After no useful support from the NHS with regard to Hari's education, this letter sought to interfere with the appeal process we were following. From the associated copies of correspondence between Alan Emond and the local authority, this was clearly a deceptive attempt to prevent Hari from accessing the education she, like every other child, was entitled to.

The opening paragraph of the letter attributed a string of labels to Hari - each one conferring a diagnosis that was incorrect and detrimental to Hari. It was clear that this supposedly independent centre would never seek to disagree with the stated labels/diagnosis, especially as the letter went on to claim there had been difficulty in getting me to accept the diagnosis.

Maybe we should explore this a little further. The central (incorrect) diagnosis in the list had NEVER been mentioned before! (Or since!) Indeed this particular diagnosis is so incorrect that to attribute it to Hari would clearly be unprofessional in the extreme. However, now it had been written in this letter as a firm diagnosis, there would be no chance of the proposed assessment contradicting it's existence.

If anybody would like to try and re-attribute this diagnosis to Hari now we would happily refer their unprofessional incompetence to the GMC!

My next phone call was to Alan Emond - who naturally wasn't available!

Instead I spoke to his secretary and demanded an explanation for this absurd referral.

Now then - we all know the secretaries are in charge of our health care and this particular one (no doubt having attended the day course in how to make the coffee!) proceeded to lie to me about the purpose of the referral. She insisted that it was purely for medical reasons and had nothing at all to do with education - and apparently she should know as she had typed the letter! When I finally managed to get a word in edge ways I told her that the woman at the centre had read the referral letter out to me over the phone - she went very quiet!

Unsurprisingly the unavailable Alan Emond rapidly became available!

I have to admit that my use of vocabulary during the phone conversation with Alan Emond was far from lady like! I read him the riot act - and he deserved every bit of it!

The only intention of this referral was to conspire and collude with the idiots in the local authority in order to prevent Hari from gaining access to education. This referral was so unprofessional and so low that they were prepared to label Hari with extra disabilities, which she didn't have, in order to support a bureaucratic policy that discriminated against disabled children and labelled them as worthless. There was never any intention that the centre should conduct an accurate assessment - they had been given the required diagnosis and were expected to stick to it - regardless of the truth.

During the phone call Alan Emond told me that if I didn't take Hari for this assessment he would inform the idiots in the local authority (OK - HE didn't call them idiots!) that I was refusing to cooperate and that this would be used against Hari. Well believe me - refusing to be part of this particular little set up was going to be a lot more useful to Hari than allowing this deceitful little charade to continue. Hari did not have the extra disabilities he was trying to attribute to her and to become part of this abusive and manipulative little game would have been totally unacceptable.

My standards were clearly much higher than Alan Emond's!

A Little Unscientific Vocabulary!

2009-04-12T16:54:00.001-07:00

Time to move away from Alan Emond - we can always return t0 him later if necessary!

We seem to have rather a large number of doctors either crammed into the dustbin, or teetering on the rim, at this point.

So maybe it's time to mention a doctor who currently (to the best of our knowledge!) has no place in the dustbin.

We first encountered Julian Hamilton-Shield when he was a lowly lesser-god at the bottom of the **** pile. He comes across as a decent human being - from whom some of today's arrogant lesser (and senior) gods could learn a thing or two. It was noticeable on the wards that staff and parents were always relieved when the presence of a doctor arrived in the form of Julian. I can only explain this by stating that his attitude towards staff, parents and patients was without fault. There was never any random criticism from him and what he lacked in explanatory facts was compensated for by a perceived genuine level of concern for his work and a clear demonstration that his work and patients mattered to him.

On one occasion Hari was very unwell and we went to A&E at Bristol Children's Hospital. Before long we were called into an examination room by a man who introduced himself as Dr. 'whateverhisnamewas'. This 'doctor' stated that his colleague, Dr. Hamilton-Shield, would be with us shortly. Dr. 'whateverhisnamewas' proceeded to take a lengthy and detailed medical history - which I found somewhat worrying as Hari's condition was deteriorating rapidly. As she was so well known to the staff at the hospital it seemed that a brief history would have been more appropriate at this point, so that the vitally needed medical care could commence immediately. However, Dr. 'whateverhisnamewas' made no attempt to instigate any medical care and showed no concern at all for Hari's condition. This was despite the fact that I repeatedly pointed out to him that Hari's condition was worsening!

Eventually Julian arrived and Hari was called into another room. Immediately medical tests and treatments were instigated and the staff around her were efficient and responsive. Clearly THEY were aware of her deteriorating condition and acted upon this.

Dr. 'whateverhisnamewas' hovered in the background contributing nothing and generally getting in the way.

The reason for this soon became apparent.

Despite his arrogant self introduction as a doctor and his reference to Julian as a 'colleague', Dr. 'whateverhisnamewas' was not a doctor at all ! Dr. 'whateverhisnamewas' was a student! A student who had deliberately delayed treatment for a sick child so that he could practice taking medical histories!

He got his comeuppance - Julian was clearly not impressed with him getting in the way and unceremoniously told him to 'PISS OFF' !!!!!!

Give that man a medal!!!!!!!!!

A Little Unscientific Use Of Students!

2009-04-12T16:50:00.001-07:00

So maybe now is an appropriate moment to consider the role of students in the NHS.

Students have to learn and obviously there has to be a certain amount of contact with patients in order to achieve this. However, there are times when patient/parent views and even patient confidentiality are compromised by this.

It has never been unusual to arrive at outpatients to find a row of students sat in the consulting room. Nobody would ever give you prior notice of this. Sometimes we wouldn't be bothered by their presence but sometimes we would rather they weren't there. On one occasion I mentioned this to a nurse in outpatients and stated that there are times when you don't want students there - the response was that we had no choice in the matter and if students were there we would just have to put up with it!

On the wards doctors would sometimes bring students to see Hari and discuss her range of problems. Now then - some doctors would have the decency to ask first if this was acceptable to us - but some doctors would just turn up with a group of students and begin their discussion without asking us and without even explaining that the accompanying group were students! Obviously they were the breed of doctors who believed that patients were not individuals and had no rights - after all - all patients were clearly OWNED by the hospital!!!!! Sometimes students would arrive to see Hari on the ward or in another department - well that was clearly one way for consultants and registrars to get rid of them for an hour - so we had to put up with them instead!

Possibly one of the most shocking student incidents on the ward was the day a group of students arrived - gawped at Hari as they walked past her bed and then headed straight for the trolley that housed the medical notes at the nurses' station. Once there, they pulled out Hari's notes and proceeded to go through them, reading out sections to each other and voicing their (generally very wrong) opinions of Hari and her symptoms - whilst they were doing this they kept looking across at Hari and myself identifying the subject of their discussion to the whole ward - and the whole ward could hear everything they said! Once they had finished this strange activity they disappeared again - I really should have read them the riot act in the middle of the ward but I was shocked by the appallingly low standard of their behaviour and had expected that one of the nurses present on the ward would have stopped them - that was clearly hoping for too much!

The lesson to be learnt is that medical students should only be present with the express permission of the patient and should be kept on a very short lead!

Unfortunately the lesson they appear to be learning is that it is OK for them to totally disregard the rights and feelings of patients and their families.

Back To The Future Part Three - The Lunatics Have Taken Over The Asylum!

2009-04-12T16:45:00.001-07:00

Just sometimes you have to give due consideration to the fact that the lunatics have definitely taken over the asylum!

Throughout her life Hari has been repeatedly let down by the medical world. They have repeatedly ignored her needs and refused diagnosis of medical problems.

Over the last seven years we have repeatedly tried to get doctors to recognise a very real medical problem - all of them let her down - again!

When things came to a head two years ago, we were left with no option but to complain.

As a result of complaining we were targeted for bullying and harassment by people who are paid to put the interests of the patient first - clearly they are not doing the jobs they are paid to do!

It seems that the people who were supposed to help Hari were too busy to do so - after all, we now know they were extremely busy focusing on the non-existent needs of the 'sickest child in Britain' - who turned out not to be so sick after all!

Whilst Lisa Hayden Johnson was pulling the wool over their eyes, as she faked medical conditions in her son in order to claim benefits that she and her son were not entitled to receive, the same trust - University Hospitals Bristol NHS Foundation Trust/ United Bristol Healthcare Trust was deliberately ignoring Hari's genuine medical needs.

Sometimes you just have to wonder what they pay these people for!!!!!!

We also wonder how they sleep at night!

The Baum Years - Part Two.

2009-04-12T16:42:00.001-07:00

Hari continued to survive (much to the disappointment of some doctors!) but made little progress in relation to growth. She would gain a little weight but it was fairly unremarkable.

Naturally this was a cause for concern and there was still no effort to investigate and diagnose the cause of this problem.

Every four or six months we would dutifully attend David Baum's outpatients clinic and he would go through his 'list' of Hari's problems. If I pushed him on the subject of her small stature he always felt that now was not the right time and say that he 'would maybe investigate it in a couple of years' - even when it WAS a 'couple of years' from such a previous comment!

So we were expected to carry on waiting for the vague possibility of a diagnosis, whilst accepting the usual harassment regarding Hari's diet and allegations of my failure to feed her properly during every admission.

The waiting was to continue for considerably more than 'a couple of years'.

There Are None So Blind As Those Who Cannot See!

2009-04-12T16:39:00.001-07:00

I detailed in an earlier post the problems we had encountered with regard to the medical world's insistence that children with cerebral palsy MUST be blind and deaf. I knew that they were wrong and it was clear to anybody who knew Hari that she could both see and hear. The hearing test arranged when she was a baby was disastrous and had resulted in her being overdosed with the sedative used for the test.

David Baum accepted our reluctance to try and repeat the test and did not disagree with my view that Hari could hear. He was keen that she should have her sight tested and referred her to the eye hospital for this.

We dutifully attended the appointment and were told that Hari would have drops put into her eyes to allow the consultant to examine them. Whilst we sat waiting for the drops to be administered who should walk through the waiting room but Mrs. Lily. Now then, we had encountered the said Mrs. Lily in the past as another of my children has a sight problem. I'm not really sure what her official title is but she is some kind of lesser god in the ophthalmic world and conducts sight tests for children.

Mrs. Lily spotted us and wanted to know why we were there - once that was explained she insisted on conducting sight tests on Hari before the drops were administered. She took us to another room and the test proceeded.

When these tests had been conducted with another of my children they had involved bright colours and pictures to attract and keep their attention. For Hari, however, Mrs. Lily used only black and white lines - tests for babies - as Hari could not physically operate the tools for the other tests.

The problem with this was that Hari was NOT a baby and was understandably bored to tears by these lines. Mrs. Lily refused to listen to the fact that Hari would react differently with more age appropriate images - she decreed that Hari could see nothing (because she wouldn't look at the boring black lines ) and hustled us back to the waiting room.

I KNEW that she was wrong!

Eventually the drops were administered and after giving them time to work the consultant examined Hari's eyes. His definitive diagnosis was : 'well she might need glasses for driving when she's older but apart from that her sight is fine'. This sort of put the mockers on Mrs. Lily's stance!!!!!!!!!!!!!

David Baum was very excited about this result and seemed puzzled that I wasn't turning cartwheels - but that was because I had always known that Hari could see and so hadn't discovered anything I didn't already know!

An Issue of General Concern

2009-04-12T16:35:00.001-07:00

There is something I need to mention which has always been of concern to me and I know will also be of concern to others.

We hear a lot in the media (mostly in relation to the older generation) about patients' daily needs being neglected on hospital wards. We hear about elderly people being offered no help with eating and being left on soiled and/or wet sheets.

There are bound to be times when this is a result of staff shortages or bad organisation but there are other times (probably more often than any of us would like to imagine) when these incidents of neglect are deliberate.

There are times when hospital staff want the patient discharged but would rather that the family took the responsibility of initiating the discharge. That way any later problems can not be blamed on the hospital as 'they' didn't authorise the discharge of the patient.

There is a familiar pattern to this neglect. Previously efficient nurses, who are helpful to family members in the processes involved in daily care needs, suddenly offer no help at all and if the family members are not present at any point ignore the needs of the patient in relation to feeding and hygiene. The intended result is that the family will be so incensed by this neglect that they will take their relative home in order to prevent the situation from deteriorating further.

This is something we have encountered on several occasions in relation to Hari - and on most occasions I could see it coming. It follows general disinterest in Hari's health from the medical team; either they are totally disinterested in the problems that caused the admission or there are further problems that they simply don't want to deal with.

The disinterest of the medical team could be problematic if they just discharge the patient and his/her condition worsens once they are home. There is the possibility of complaints and media coverage resulting from early and inappropriate discharge. So if the family can be deceived into initiating the discharge through this type of neglect there can be no come back on the medical team / hospital.

I should point out that individual nurses should not be blamed when this occurs - they are following orders and dare not disobey.

I should also point out that we have been aware of this nasty little trick from very early on and have been able to predict when it was about to happen - oh and we know who was giving the orders for this when it happened at the end of Hari's last admittance in early 2008!

Dumbstruck Doc!

2009-04-12T16:30:00.001-07:00

Early discharge from hospital can be problematic for the patient. These days hospital stays are shorter, sometimes due to advances in treatment but sometimes due to the risks associated with infections - the longer you are in hospital the more chance there is that you pick up some kind of infection - and hospital acquired infections are notoriously difficult to overcome.

In the past it was not unusual for children (and maybe adults too) to be readmitted within days of being discharged because they had been discharged too early and required further treatment.

This happened with Hari on more than one occasion. It was most infuriating when it happened after there was no diagnosis of the problem that had caused the admission - creating the impression that the readmission could have been avoided if more attention had been paid to her needs. But generally it was a 'virus' and she was deemed to have recovered.

On one occasion Hari was particularly unwell but the GP had just fobbed us off and insisted that there was nothing wrong with her. The following day I took her to A&E at the children's hospital and she was admitted. No diagnosis or cause was identified and within a few days she was sent home again.

The system, at that time, was for the lesser gods to complete a discharge summary form which was placed in a sealed envelope for the parent to hand deliver to the GP.

Did they really think that we didn't open the envelope and read the contents?

On this occasion they refused to give me the discharge summary - stating that it would be sent in the post. They weren't refusing to give it to me because they were worried that I would read it - but because they knew that I had every intention of leaving a 'suitable' message for the GP when I delivered it - after all - he had insisted that there was nothing wrong with her just a day before she had to be admitted!

However, within a couple of days Hari was readmitted - clearly having been discharged too early. Yet again there was no diagnosis or identified cause of the problem and eventually she was discharged again.

On the morning of the day she was being discharged I was walking along the corridor and encountered the lesser god in attendance. He stopped me and said that he would be along to the ward shortly to do the discharge summary. I was surprised that he was going to give me the discharge summary and said so. He responded by claiming that they hadn't done the summary on the previous admission as they expected Hari to be readmitted.

Now if that was the case why did they discharge her in the first place?

I wasn't fooled for a minute and quickly informed him that I knew that the real reason for the earlier lack of a discharge summary was that they had been trying to prevent me from accompanying it with a 'suitable' message for the GP.

There was no response apart from the look on his face!

Don't you just love it when you are SO right that you leave them speechless!!!!

Back To The Future Part Four : Greater Moral Conscience (GMC)

2009-04-10T06:06:00.011-07:00

Just a note on today.

I've mentioned before that Saturday morning is for reading The Guardian Review. (One of my little pleasures in life!) I also read the main part of the Guardian and follow the 'Bad Science' column avidly - it's a hoot!

Today's 'Bad Science' focused on this week's reports of the survey of doctors which revealed fear and threats to employment if they do the right thing and blow the whistle. It even mentioned Stephen Bolsin, who famously blew the whistle which revealed the heart scandal in Bristol.

Interestingly 'Bad Science' also claimed that the General Medical Council (GMC) says doctors should blow the whistle or be struck off.

Now there's an idea!!!!!!!

But a different approach would be so much easier - no need for whistle blowing - no need for us to report anybody to the GMC (and a quick look at their website reveals that we have plenty of sound reasons to do so!) - all they have to do to avoid such time consuming and stressful encounters is to put right the wrongs they have done.