Wednesday, 20 August 2014

Amazing people who do good things

I will shortly be stepping down as a Non-Executive Member of the Human Tissue Authority having served two terms of office. It has been a fascinating and sometimes challenging experience but there was a strong sense amongst the non-executives that we were doing something really worthwhile and, in a small way, giving something back.

I have worked with three Chief Executives and three Chairs and a number of senior staff over the last six years. During many challenging periods it has stuck to its purpose with very committed staff and a clear focus. It is an organisation that is not only fit for purpose but pretty fit as well. 

You can read all you want to know about the HTA here but what I really wanted to write about was something that is rarely mentioned but is a key duty of the non-executives on a weekly basis and that is, sitting on a panel to determine whether a living organ donation can go ahead. (Read here about living organ donations.)  

The panel comprises three non-executives, all trained (and retrained every year) and is conducted online (and in rare and complex cases we meet in person).  This has given me a window on a world of amazing people ranging from parents donating kidneys to children or vice versa, brothers to sisters, friends to friends and, more regularly now, people who have taken the decision to donate a kidney altruistically – they have no idea and may not ever know who is receiving it which I find awesome.

If, like me, you carry an organ donor card then when you die, either one or both of your kidneys, for example, could go to someone on the long waiting list.  Very often they are not OK and this isn’t possible – rather fewer are used each year than you might think.

The other option is a donation from a living person – usually a kidney, and increasingly, part of a liver. In some very specific types of donation the decision has to be made by a panel. We have to be satisfied that the donor has capacity to understand the risks involved, the nature of the procedure and the consequences and can therefore give informed consent.  We also have to be satisfied that they are not being pressured or coerced in any way and that there is no reward involved – the latter is illegal.

Much depends on the Independent Assessor (IA) – a volunteer called on by the transplant team who also undergoes thorough training. They interview the donor and the recipient to ensure that there is no evidence of pressure being brought and that the donor understands the procedure and the risks involved. The donor also signs a statement to say that no reward is involved.

A huge amount of work goes into each case before we see it – from the transplant team, the IA and the staff at the HTA. Some of the evidence is pretty black and white – what isn’t always so clear is whether or not there is pressure being brought to bear or perhaps if there is an economic relationship between donor and recipient. The IA interviews the donor and recipient separately and together and is alert to body language and other signals that not all is as it seems. Sometimes relatives come from abroad and it isn’t always straightforward. It is a very responsible task for both the IA and the panel.

What I shall miss – especially in the midst of all the horror that is on the news at the moment – are the gentle but heartrending statements quoted by the IA – such as “I just want my sister to have a normal life and be there for her children” “I have to watch my son dialyse twice a week – he is a young man, I just want him to have a better chance, I don’t need two kidneys”. And from the altruistic donors – some of them have seen others benefit from a transplant and the huge impact it has had and want to “give something back”.  That’s quite a gift!

The good news is that the number of donations is increasing so more people are being given their lives back but I don’t underestimate what a difficult decision it is to be a living donor and I really do applaud those who do it. I will miss reading the stories every week and being reassured in a world where much is wrong there are some amazing people who do good things.

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