Wednesday 14 April 2010

Please Sir, we want some more

I have been watching the BBC2 tv programme filmed at Great Ormond Street Hospital for Children(GOSH). The latest episode was last night and centred on the excellence of the facilities, the world-wide pressure upon these and the staff and the ethical connotations of much of the treatment given; much of which is merely palliative in scope and outlook.

Now an NHS Hospital Trust, Great Ormond Street Hospital is world-renowned for its pioneering work in children's medicine. Due to its ground-breaking work over many years, it is amongst the most famous hospitals in the United Kingdom."

In 2002 GOSH commenced a redevelopment program which is budgeted at £343 million and the next phase of which is scheduled to be complete by 2012. The redevelopment is needed to expand capacity, deliver treatment in a more comfortable and modern way, and to reduce unnecessary inpatient admissions.

Seeing the reports in proximity to the Manifesto that have been issued gave a clear picture of the problems in accepting what the two parties have said. The development budget looks fearsome but must pale into insignificance when set against the running costs of the facility. The cameras had a no-holds barred access to staff and case meetings such that we were privy to discussions that even parents of sick children may not have witnessed prior to the report being screened.

What came across was that the professionals seem not to accept that any case is beyond a solution. If there is no existing standard treatment, they will get together and devise one from scratch. One gets the sense that one is in a research laboratory rather than a treatment centre. Instead of animals awaiting rescue by PETA one is faced wit desperately ill infants and distraught parents.

The professionals - consultants through to floor nursing staff - show tremendous concern over the ethics of what they do or what they will try to do. Last night's showing included a child born with no means of getting air into it's lungs. There is no known remedy but they sat together and sketched out on a note-pad how they could set about creating a false trachea. Outlook - if successful - included a year's stay in an Intensive Care Unit for a child that would never be able to speak and at significant risk of acquiring a fatal infection.

There was much discussion as to the ethics of pursuing the theoretical solution before it was accepted that there should be no treatment and the parents were told this. Harrowing.

Another topic was care of premature babies. The report revealed that there are times when a very high percentage of available beds are taken up by children born grossly premature after merely 23 or 24 weeks of pregnancy. Further disclosure was that there was little that could be done for these infants and the hospital was just getting them strong enough to be sent home to die there. I questioned the humanity where it might be necessary to deny admission to, say, a three or four year old child with desperate needs requiring a high level of surgical intervention and follow-up high dependency nursing. What ethics would run there - would they evict the best preemie so as to find space for junior?

This caused me to recall a conversation I had had with my maternal grandmother some 65 plus years ago. She had been a Matron during the 1914-1918 War. At about 9 years old I had overheard part of an adult conversation and I questioned her whether it was true that children born very sick were just left to pass away in the delivery theatre or at a home-birth with nothing done for them. She confirmed this and explained why it was not reasonable to extend a life that sure to be difficult, maybe short and painful, in a family with siblings and low income. Even as an impressionable kid, I understood her point and that situation stayed with me from that time. In many respects, I hold it today.

So, why the connect with manifesto? Dave says we will have a future where decision making is devolved to we, the people. Grumpy Brown offers us a future with priority funding to provide excellence in the NHS. Anyone with a particle of humanity in their genes would want everything done for kids such as the preemies or the no-airway child. The realities of the ethical association would have money thrown at them. I hold that the sad situation with NHS budgets is the elasticity of demand. Give them a billion. They will use much of that to extend, say, the range of our life span from premature through to very aged. Treatment deemed to be too expensive would be undertaken and the demand would be to extend what can be done. However much we allow, they will over-spend and call for more like some maniacal Oliver Twist. If they are denied, we would hear the calls for better from all sides of the political spectrum.

The thought that I might be told to take a child home and watch them die is heart wrenching - and I am a hard, cynical person. That abandonment by the hospital would be deemed as unsatisfactory - indeed, I am amazed we have not heard of a claim from someone involved in that decision making or in communicating it to parents. Another area for extending the gap between planned and actual columns on budget reports.

The programme has the side-effect of illustrating just how meaningless any manifesto is when examined beyond the glossy covers and slick professional presentations. There are significant portions where they fail to fully detail - even before they get to the deliberately misleading sections.

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