Organ Transplants

Madeleine Moon Excerpts

Tuesday 8th July 2014 Westminster Hall

[Mrs Madeleine Moon (Bridgend) (Lab)]

I well remember watching the television as a child in 1967, hearing the news of Dr Christiaan Barnard’s first heart transplant and being absolutely amazed. It seemed like something out of a science fiction book, yet we have moved in a relatively short space of time so much further forward. The one area, however, where we have not moved forward is public recognition of the essential part they have to play in donating a life. We have to raise awareness of that and of transplantation’s possibility and viability. Government and surgeons can only do so much; the public are the vital missing component.

We have, as has been said, a large percentage of public buy-in to the concept of transplantation. Some 97% agree with it, but only 30% carry donor cards. I follow the hon. Member for Montgomeryshire (Glyn Davies), and he and I co-chair the all-party kidney group. That statistic is important, since those awaiting a kidney are the largest group of people requiring a transplant. Some 5,640 people are awaiting transplants. Since April this year, 457 people have received kidneys from deceased donors and 158 have received kidneys from living donors. Those who are still waiting and their families and friends are deeply worried that a donor will not be found in time. In the meantime, they face kidney dialysis, which is a lifesaving but traumatic event. For many, it happens three or four times a week, and their life is on hold.

I disagree with the hon. Gentleman on the initiative taking place in Wales. People frequently say things are half the size of Wales or have twice the population of Wales. We are always used as a measure, but I have long felt that we are a nation of 3 million people that has huge potential for trying new ideas and huge opportunities for breaking new ground. In Wales, 56 people were donors in 2012-13, enabling 211 organ transplants to take place. Some 200 people are on the waiting list in Wales. We have to look at anything that makes a difference. We are a small country and we have to be creative.

The Human Transplantation (Wales) Act 2013 comes into effect on 1 December 2015. Will it make a difference? It provides an opportunity to learn a lesson, not just for Wales, but for the whole of the United Kingdom and, hopefully, the whole European Union and the whole world. I held a debate in Archbishop McGrath, which is one of my local Catholic schools, and the students chose the subject. They wanted to debate it. As young people, they felt that the issue affected them. What was interesting was that over and over again, issues came up where we have to be up front politically and enter into the debate. There was a fear about harvesting and people being allowed to die because surgeons wanted their organs. They were shocked to find, when they did their research, that in reality someone has to die to be an organ donor, in the right way, at the right pace and in the right place at the right time. The best place to be an organ donor—or the worst place, depending how one looks at it—is a high dependency unit, because there is an idea of when someone will die and there can be time to find the person who needs to receive the organs, an available surgeon and an operating theatre.

I reiterate the issues raised by my hon. Friend the Member for Bristol East (Kerry McCarthy) on psychological preparedness, which we do not highlight enough. There is huge stress and strain on people waiting for an organ. Sometimes, when the day arrives, they cannot face it. They feel terror at the change in their life. People have minutes in which to respond, and we should not underestimate how traumatic that can be, or how traumatic survivor guilt can be, whether that is for the person who died so they can live or for those still on the waiting list. The person taken off the list has a chance to live, while others were turned down.

I will briefly talk about some constituents. Jean Schofield gave her kidney for her son, Mark, who has now had three transplants. It is not necessarily just one transplant that is needed; some people need a lot more. Her fear and anxiety over her son has made her a driven fundraiser. She is an absolutely amazing example of how people can give their energies to organ donation and to fundraising for research and support for those who suffer.

Katy Lloyd, who is 24 and from Bridgend, has cystic fibrosis, which was identified when she was four months old. I cannot begin to understand what her family must have lived with knowing that she would eventually need a double lung transplant. The tension and fear experienced by her parents every time she had a cold or fell ill must have been horrific. Following her transplant, Katy said, “I didn’t think about it. It was all I’d ever known.” Imagine if all you had ever known was that one day you would need to face such an operation and that your life was on hold. She has made a fantastic recovery and is a great example of the difference that an organ transplant can make.

Judith French, a great friend of mine, has polycystic kidney disease. Polycystic kidneys cannot be removed during transplants and continue to grow. She was unable to leave the house and had a frequent, urgent need to be near a bathroom. The transplant was wonderful, but she still has large and growing polycystic kidneys, which is like carrying around a big bag of potatoes. She has high blood pressure, a swollen stomach and back problems, but she was refused access to benefits because she had had her transplant. We must consider how the benefits system recognises that transplants do not necessarily end the difficulties that some patients face and that they may still need support.

Andy Eddy, whom I recently met at an all-party group meeting, is 48 and married with two children aged 11 and 13. He was a practising solicitor and was advised to have a hepatitis C injection. An unknown genetic defect meant that the inoculation—a positive step to protect his health—actually led to the destruction of his liver. He had liver disease and liver failure and faced a long, horrific wait on the transplant list while his health declined. His life has been turned around following his transplant. He joined the British transplant games as a volunteer, winning one silver and three bronze medals, and is now chair of Transplant Sport. I have written to the Minister about the games, because they should be held at the same time as national transplant week, because they help to show the difference that can be made by a donation. Someone can be taken from death’s door to athlete. That is how big the change can be and that is what we must ensure that people understand.

Finally, it is vital that we get the message out about the need for conversations about one’s wish to be a donor. Talk to your family today about what you want. My husband has a motor neurone condition called Pick’s disease and I have power of attorney over his health. We went to see a consultant, who asked me, “On death, would you be willing for your husband’s brain to be donated for medical research?” I can still feel the shock at being asked that question. I said, “My husband still has the capability to make that decision. I want him to make it.” He said, “I want to do it.” I cannot imagine having that conversation at the point of his death. Such conversations must happen now while people are fit and healthy and they must be stark and serious. That is what I want to come out of today’s debate. I want families around Britain to be having those conversations, so we do not get refusals when people are carrying donor cards.