CLDF Conference Session - Transplant - Join the conversation...

[Caitlin-CLDF]

Children’s Liver Disease Foundation held its National Conference and Family Day on Saturday 6 October. The afternoon consisted of four parallel sessions covering various topics.

The session was attended by parents of children who may need a liver transplant in the future and the room was silent as the audience absorbed what the experts had to say.

Moira Perrin, transplant co-ordinator at Birmingham Children’s Hospital, explained the criteria for transplant, the process of assessment and the importance of parents understanding the risks and benefits of a liver transplant for their child. She also talked about the harsh reality of life on the transplant list, waiting for that all-important phone call.

Professor Nigel Heaton of Kings College Hospital, gave an overview of the history of organ transplant in the UK, and spoke about the long term outcomes following liver transplant, focussing particularly on what might be done to improve the number of organs being donated and the survival of those who have had a transplant. His ideal future, however, would be one where childhood liver disease could be treated without transplant so there would be no need for transplant surgeons!

The discussion of such a topical and controversial topic threw up some interesting questions from the audience. For example:

What’s happening about presumed consent for organ donation in the UK?

Moira Perrin explained that Wales would soon be moving to a system of presumed consent but there was no suggestion that the rest of the UK would do so.

Nigel Heaton pointed out that families’ failure to give consent meant that in 30 – 50% of cases, organs would not be retrieved for transplant. This led to the question:

What is the point of donor cards if family members can override them?

All the medical professionals thought this was an excellent question which provoked further discussion.

What do you think?

Do you think that moving to a system of presumed consent would increase organ donation or do you think that it should remain a gift?

Do you think that the British public would not like being told what to do regarding such a personal issue?

And do you think that families should have the final say on whether a loved one’s organs can be taken for donation, whatever the wishes of the individual concerned?

Should we all be more open about our wishes on this subject? Or are we all too reluctant to talk about death?

We would love to know what you think.

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I carry a donor card and I would be most unhappy if my family overid my decision not to offer my organs. They understand and I believe that they would follow my request through, however if my death is sudden and tragic I can understand that this might put a different slant on it. Having not been placed in this position myself it is hard to really say how you feel, I just hope I would make the correct decision.

I really don't know how I feel about presumed consent because this can still be over-ridden! I do know that having watched the recent TV programme I was uncomfortable with making a video diary advertising for a new organ, but again I am not in this position.

However, my daugther was on the transplant list for a few months and it was not a pleasant place to be, fortunately her liver is working well on medication and she has been taken off the transplant list. Should she have needed a liver both myself and her dad would have been tested so that hopefully she could have had a section of ours.

I think yes we are reluctant to talk about death; my daughter having faced it most definitely does not like to talk about it. My granny, who has long since passed was never scared of death because she used to say "I'm going to see my mam again", guess she had the right attitude. :0)

[Rich78]

My wife was a live liver donor for our baby daughter this year. This offered us a fantastic opportunity to have more control, rather than the face the daunting uncertainty of a waiting list. Of course live donation comes with its own uncertainties and is no easy option. We also had to cope with my wife's recovery from her surgery - another pressure to add to coping with our child's illness. I would like to see progression with organ donation and presumed consent seems to make a lot of sense. A person's body is precious and it makes no sense to me that their family or anyone else can remove their consent at a point where that person can no longer have a say in the matter. Better availability of donated organs would improve the life chances of thousands of people every year as well as ease the ordeal they and their families must face when transplants are necessary. The UK has been a leading light in transplant advances but there is much more to it than the medical aspect - the government and health authorities should prioritise this and work together on this issue. The longer they stall, the more people are left to suffer unnecessarily.