Presumed Consent on Organ Donation - Written Evidence from Paul Thomas

My brother is on kidney dialysis. In May last year I started the process of seeing if I could become a kidney donor for my brother. As yet, I don’t know whether I will be or won’t be. So, my brother’s quality of life has greatly worsened and I’ve had a very stressful 10 months, and there’s no end in sight.

It seems to me to be a primitive way of going about things - something that will be looked back on in 10-20 years (hopefully sooner) with disbelief. We should be aiming for a situation in which dialysis and live donating are the last resort. I am aware that it is usually better for someone to have a kidney transplant from a live donor, but I think that putting someone else’s health and, possibly, life at risk, unless there is no alternative, is undesirable. I’m in my 50s and have been on medicine for high blood pressure for 20 years, so I have concerns about my health in the future if I donate a kidney. However, I am reluctantly willing to undertake the operation if the doctors say that they think I am healthy enough to be a donor, as hopefully it will result in a big improvement in my brother’s health (although there is obviously a chance that it won’t). The point I am making is that we should have a system whereby people like me shouldn’t have to go through this, and people like my brother shouldn’t have to spend years on dialysis (sometimes a fatal length of time).

As well as the effect on people’s lives, there is also the economics of the situation to consider. People on dialysis often loose a lot of time at work, if they are able to work at all. People going through the process of becoming a donor also loose time through hospital appointments and the recovery period after the operation. There is also the cost of the treatment to the NHS, which I presume is significant.

Obviously I am arguing in favour of 'presumed consent’. However, I think that a lot more could be done under the present system to address the huge gap between the numbers of those who are registered organ donors and the numbers of those who say that they would like to be but 'haven’t got round to doing it yet’. It is difficult to walk down the street in a shopping centre without someone trying to get you to join the RAC etc., so why not have stalls encouraging people to sign up to be donors? Also, why not ask the public sector organisations and big companies in Wales to target their employees through pay slips, e-mails, articles on websites etc? Why can’t something as important as this be marketed? Make it easy for people to 'get round to doing it’.   

It seems to me that changing the rules on organ donation and/or greatly increasing the percentage of the population signed up to be organ donors should be a key part of promoting 'caring communities’ and a 'caring Wales’.  

Paul Thomas