Organ Donation Register

Jim Shannon Excerpts

Tuesday 17th June 2014 Westminster Hall

[Jim Shannon (Strangford) (DUP)]

I congratulate the hon. Member for Burton (Andrew Griffiths) on securing this debate. Without doubt, this is an important issue. In his brief speech, he outlined the importance of organ donation to us all.

Some of us come to this debate with personal knowledge, and other Members with a very personal understanding will speak shortly, too. I will speak not only about cold facts but as a first-hand witness who was emotionally involved with a family member in need of an organ donation. Twenty-three years ago, my nephew, Peter, was born with one kidney that was not working and another that was the size of a peanut—I think that is how the doctor described it. That clearly inhibited my nephew’s quality of life. For many years, until he received an organ donation, he was unable to have the quality of life that everyone in this Chamber today is privileged to have.

My second son and my nephew were born at about the same time, so I was always able to compare their quality of life—my son, who was perfectly healthy, and my nephew, who unfortunately was not healthy as he awaited a kidney transplant. My nephew was restricted in height and in energy, and he was always a yellowy colour. That is hard for a family, but it is much more bearable when they know that kidneys are available in the organ bank ready to be transplanted. Peter was able to get that transplant, and it literally saved his life. That underlines the importance of organ donation to every member of my family and my family circle.

I do not want any parent or family member to be dealt the blow of knowing that a relative is in need of a transplant but there are currently no organs available. I do not want anyone to experience that, but that is what is happening in the UK today. That is why I feel so passionately about this debate. It will come as no surprise that I, as a Member of Parliament and as an individual, am a registered organ donor. Registering as an organ donor is much easier in Northern Ireland because whenever we apply for or renew our driving licence, we tick a box on the form to show whether we want to be an organ donor. Those who say yes will automatically become an organ donor should their time in this world come to a tragic end.

In Newtownards in my constituency of Strangford, a garden has been constructed for people who are having dialysis and renal treatment at the Ulster hospital in Dundonald. It was felt that we needed a garden in which people could have tranquillity and peace, and to thank people who had donated their organs over the years. The council and local representatives were both involved. Rather poetically, perhaps, just two miles from that garden, a young man—I knew his father well—died some years ago. After being injured in an accident, his organs were donated to save other lives, which shows that there is an opportunity to save lives. As the hon. Gentleman said in his introduction, we can give an opportunity to those who have not had the quality of life that we have but could have it with an organ donation.

Despite all of our medical advances, some 1,000 people die each year in the United Kingdom waiting for an organ transplant, which is shocking. We desperately and urgently need to increase sign-ups to the organ donation register. With that harrowing statistic before us, what can we do, and what do the Government intend to do, to increase sign-ups? I am pleased that the Minister is in her place. I have asked her questions on this previously, and some of the answers are in the Library debate pack. There have been positive responses from the Government, and I have no doubt that we will get such a response at the end of this debate, too. We seek to add further contributions and evidence to the debate, and perhaps the Minister will be able to respond.

It is pleasing to read that, in the past five years, the number of people in the United Kingdom of Great Britain and Northern Ireland who donate organs after death has increased by 50%. That is good news and it matches a target set by the Department of Health’s organ donation taskforce in 2008. I suppose we are asking how we can do more. How can we make organ donation more appealing or more real to people?

[David Simpson]

We heard earlier that some 7,000 or 8,000 people are waiting for an organ transplant. Does my hon. Friend agree that, if we could dramatically increase the number of organ donors, a knock-on effect might be that it would end organ farming and the sale of organs on the black market?

[Jim Shannon]

That is a pertinent issue. I understand that organ farming is not the Minister’s responsibility, but we are aware of parts of the world where people are given a great deal of money to donate an organ for use elsewhere in the world. That is a travesty and an injustice for poor people who find themselves in financial difficulties and see this as a way out. My hon. Friend is right that that needs to be seriously addressed.

NHS figures show that there were almost 4,700 organ transplants in 2013-14, which is an amazing figure compared with 3,717 organ transplants in 2009. That is an increase of almost 1,000, which is a clear indication that Government policy is starting to take effect, with the general public’s co-operation. That is good news. It is about how we go over fences to get a wee bit extra and do more.

We must not praise ourselves too much, however, and settle for the progress that we have made. There is still a long way to go. NHS statistics show that on 31 March 2014, as my hon. Friend said, 7,026 people were on the transplant waiting list. Although that number has been decreasing for the past five years, it is still much too high. The Government must do more to cut those waiting lists dramatically. What new targets have been set by the organ donation taskforce, and how does it intend to raise the public’s awareness of the great importance of this issue?

During May and June 2013, Optimisa Research conducted market research on behalf of the NHS blood and transplant service to measure public awareness, attitudes and behaviour towards organ donation. The findings of that research highlight how much work the Government have to do to increase sign-ups. We must all energetically encourage those around us to sign up, but the Government need to lead, too. Some 54% of those questioned had not seen any recent publicity about organ donation. What is being done to highlight organ donation? The hon. Member for Burton referred to that, too. It is clear that, as a result of poor publicity, organ donation is not currently in the public consciousness as it should be. What steps have the Government taken to improve that and change the perception that organ donation is the exception rather than the norm?

Of those people questioned, 31% would consider donating some or all of their organs, but are yet to be fully convinced. Again, that indicates that there is a swathe of people who are susceptible to persuasion, which could lead us to the next stage for organ donation. Why are the Government not engaging with those people as they should? The research also found that the key personal barriers to donating include mistrust of medical professionals and discomfort in thinking about death. Death is a subject that we sometimes do not want to think about, but it is one that we must all consider. There is no better way of setting the scene than Mark Twain’s comment that the only two things in life we are sure of are death and taxes. Death is an issue for us all, and we must consider it.

It shows that the public are not sufficiently well informed. If the Government better presented information on organ donation, it stands to reason that the barriers preventing people from signing up would ultimately be removed, the number of people on transplant waiting lists would fall dramatically, the number of transplants would increase and, most importantly, the number of people in the UK who die while waiting for a transplant would fall significantly. We must consider that issue as well. We see so many stories in the press and on TV about those who are desperately waiting for a transplant and have a very short time between life and death. Every effort must be made to ensure that we can save the British lives of those whom we represent. Why is more not being done?

It is clear from the research that public awareness must be raised, and it therefore follows that the Government should focus on that, but there are also other means of increasing sign-ups. Although opinions are mixed on the issue of express or presumed consent, I would like to present my personal view. I encourage the Government to consider legislating for a soft system of presumed consent. Although some might disagree, I believe that such a system is right because it gives life. Perhaps the best time to ask a relative to consider organ donation is not when somebody is lying on their deathbed. Emotions take over. I am not saying that they should not; I am just saying that it is a reality of life, and we must address it. Personally, I believe in a soft system of presumed consent that allows relatives of the deceased to object to donation if the deceased died without expressly electing whether to donate their organs. Such a system is in place in Belgium, where the family’s prerogative is a legally defined right. I suggest to the Minister that we should at least consider it, debate the issue and put it at the centre of the organ donation debate.

Introducing a system of presumed consent would greatly boost the number of organs available for transplant. A 2006 study by Abadie and Gay found that countries with a presumed consent system had 25% to 30% higher donation rates than those with an opt-in system, which is a significant difference. If taken on board in the United Kingdom, such a system would cut the number of those waiting for a transplant and save lives.

I have asked the Minister what she is doing to encourage more older people to become kidney donors. She responded that there is no barrier preventing elderly people from being organ donors if their organs are healthy. It is not out of the question for those with a few more years on the clock to consider organ donation as well.

In my home province of Northern Ireland, only 32% of the population are registered organ donors, the lowest percentage of any area in the United Kingdom. That is unacceptable. Our devolved Assembly is currently processing a private Member’s Bill to increase awareness of organ donation, which proposes to provide people with an opportunity to sign up for organ donation when applying for a driver’s licence. The question will allow people to answer yes or no—they can make up their own minds—but it will be compulsory to answer; the question cannot be ignored. I am fully behind the Bill, as I feel that it will greatly boost the number of people who sign up for the organ donor register. How do the Government intend to work alongside Mr Poots, the Minister with responsibility for devolved health matters, to increase much-needed awareness in Northern Ireland? It is clear that a UK-wide strategy is the most effective way of dealing with the matter. The Minister will know that I often say here in Westminster Hall and in debates in the Chamber that it is important that the United Kingdom regions learn together and bring together all our knowledge so that we can present it.

Time has passed by, but my final point is to highlight the fact that research has found that if organ transplantation rates could be increased by 50% across the UK, the NHS would save money. The hon. Member for Burton mentioned a saving of more than £300 million. The figures depend on who is on the list, but the saving to the NHS would be significant. That cannot be ignored or denied. If we had that in place, it would help the Minister and this Government to manage their health budget better. In essence, if the Government save more lives through organ donation, they will have more money to spend on saving the lives of others. The Government and we as Members must not rest on our laurels and be happy with the progress made. The Government must take steps to ensure that the public are fully aware of the issue, and to save more lives.