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.