Tuesday, April 14, 2009

Hari And Her Dustbin Full Of Doctors!




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.

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.

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!

'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.

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.

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.


Referring The Complaint To The Healthcare Commission.

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.

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!

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!

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.


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.


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.

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.

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!

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.

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!

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!

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.

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.

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!

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.

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!

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!

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!

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.

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!

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?


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!

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.

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.

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!

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.

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!

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!

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!

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

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 !

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.


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!