Organ Donation Register

David Simpson Excerpts

Tuesday 17th June 2014 Westminster Hall

[Andrew Griffiths]

I thank my hon. Friend for that intervention. Perhaps he is just a little presumptuous. I was not intending to argue for the opt-out system. All I was going to urge the Minister to do was to look at these issues on the evidence. What I suggest is not that we should come forward with a similar proposal for England and Wales, but that we should follow the evidence. We should look closely at how the system is implemented in Wales and at its impact. My hon. Friend has said that he will talk about the situation in Spain. In Spain, there was a delay before there was an increase in the number of donor organs available, but all the evidence seems to suggest that the system has led to a big increase.

Not only is the debate important, but it raises awareness of organ donation. It gets people talking; it stimulates discussion, which is important. My hon. Friend will know that the principle of the opt-out system is supported by a number of organisations, including the British Medical Association, the British Heart Foundation and Kidney Research UK. As I said, I hope that the Government will look closely at the evidence—at the results of changing the law in Wales—and look to reconsider their position as the evidence develops. My hon. Friend may well be right that there will be no marked increase in the number of organs available for donation, but we do have to follow the evidence, look at the results and decide what we do in the rest of the UK as a consequence.

There was a call by those involved in organ donation committees in our hospitals to look at the issue of the lack of family consent overriding the wishes of the deceased.

[David Simpson (Upper Bann) (DUP)]

I congratulate the hon. Gentleman on obtaining this debate on what can be a very controversial issue. Does he agree that we should exhaust every possible avenue, whether it be schools or the driving licence organisation or whatever, before we even look at going down the road of an opt-out system, because it is a very controversial issue? In Northern Ireland, 527,000 people—32%—are on the register. The figure is increasing every month. A consultation is ongoing. I understand that in October a consultation will also be carried out on an opt-out system. I think that we need to exhaust every other avenue and then have further debate on that issue.

[Andrew Griffiths]

I agree with the hon. Gentleman; he talks a great deal of sense. The issue is very sensitive and we do not want a backlash in the form of people deliberately coming off the organ register because of ethical and moral concerns. I agree that there is more that we can do. I congratulate the Government on what they have achieved so far, but we can do a great deal more. The issue is important not only because lives are at stake, but because it has a massive impact on NHS costs, which I hope to touch on towards the end of my speech. I completely agree with the hon. Gentleman.

I want to address organ donation in the black and minority ethnic community. I am the Member of Parliament for Burton, which has a large Muslim population—mainly Pakistani and Kashmiri diaspora—who contribute massively to the community. However, there is no doubt that there is a problem with organ donation among BME communities. There is particular concern about the lack of donors coming forward from BME backgrounds. The startling truth is that people from BME backgrounds are up to three times more likely to need an organ but are less likely to donate; they need it more, but they donate less. Only 3.6% of people on the organ donation register are from ethnic minority backgrounds, despite their making up 10.8% of the population and a staggering 27% of the waiting list. Those figures show how skewed the numbers are and how desperate it is that we do something about the issue.

More than 30% of people listed for a kidney transplant are BME, compared with just 5.6% of deceased kidney donors in 2013. Why is that important? NHS blood and transplant statistics show that, on average, people from black and Asian backgrounds have to wait a year longer for a kidney transplant: between 2006 and 2010, the median waiting time for a kidney transplant in the UK for a white person was two years and 363 days, yet for a black or Asian person the wait was three years and 320 days. That is a whole year longer, just because of someone’s ethnicity. Family refusal rates among ethnic minority backgrounds also play a big part. The Minister will know that those rates are much higher than for the population as a whole, with 30% of BME families giving their consent to organ donation, compared with 68.5% of the white population—more than twice as many. That is why it is so important that we tackle the issue of organ donation among the BME community.

Ethnicity is hugely important in organ donation because a person is much more likely to find a match with someone from a similar ethnicity. It is vital that we do more to encourage people from BME backgrounds to sign up to the organ donation register. That is not the only answer; it is also vital that we break down the cultural barriers that prevent BME families from consenting. I commend the Government on the NHS blood and transplant team’s faith and organ donation summit in May last year. It was a good event, and it was agreed that sustained engagement on organ donation by and in ethnic minority communities is needed.

Those are all good words, but I am not seeing them reflected in my community. I am not seeing organ donation being discussed in churches, mosques and community centres. I am not seeing our imams and priests talking to their communities and encouraging them to come forward and donate—to do the right thing by signing up to the organ donation register. None of the major religions object in principle to organ donations, but of course opinions in communities differ. Organ donation is often not discussed, or is called, for example, un-Islamic. We must address such things if we are to break down prejudice and save lives in BME communities as a result. Leaflets have been distributed among different faith communities to that effect, but I hope the Minister will agree that much more can be done.

One way to increase donation that has been advocated is through the use of specialist nurses in organ donation—there is a wonderful acronym: SN-ODs—who were introduced following the 2008 recommendations. We now have 250 SN-ODs, who are there to support people going through the organ donation process and to raise awareness of donating. The National Black, Asian and Minority Ethnic Transplant Alliance is calling for more SN-ODs to come from ethnic minority backgrounds, and I agree with it on that. I am not sure whether the Minister is aware that of those 250 SN-ODs throughout the country, just one is from a BME background. Is it any wonder that we are failing to break down cultural barriers at that terrible moment of loss, when we have only one person from a BME background to engage with people who are suffering such loss, and to encourage them to give life to others?

The proposed action plan arising from the summit in May last year featured a number of criteria on increasing engagement with ethnic minority communities. The aim was to fulfil them before September this year, and other criteria by a year hence. I would be grateful if the Minister would give us a little more information about what she and the Department are doing regarding those important criteria.

I know that other Members wish to speak, so I will soon draw my remarks to a close, but I want first to touch on a few points. First, I called for this debate at the request of William Saunders, the chairman of the organ transplant committee at Queen’s hospital in my constituency. It is fantastic to see William and his team, like others throughout the country, engaging as members of the community to try to encourage others to do the right thing and sign up to the organ transplant register. I hope that the Minister agrees that such people are doing a fantastic job in our community and that more must be done.

I also called for this debate because of a constituent, Katherine Sinfield, who sadly was diagnosed with leukaemia. My local newspaper, the Burton Mail, has done a huge amount to highlight Katherine’s case and to encourage people to come forward and undergo stem cell testing in order to find her a match. I am delighted to say that she has now found a match and had her treatment. We all wish her well, and she is doing incredibly well.

Through the Burton Mail’s campaign, I have seen the difference that raising awareness can make. The work of the Burton Mail and the Anthony Nolan trust has resulted in a large increase in the number of Burton residents who have come forward to be tested and who want to do their bit. It has also raised a huge amount of money for the Anthony Nolan trust. If we can encourage similar activity across the country—if Members will raise the issue in their constituencies—we can all play our part in raising awareness.

In conclusion, with such a high level of support for organ donation among the general public—96%—it is surprising that there is such difficulty in finding enough donors to meet the demand for transplants. It is clear that more work must be done. Despite these times of constrained public spending—we all recognise the difficulties in which the Government find themselves—I believe we can do more to solve this problem. Indeed, the “Taking Organ Transplantation to 2020” strategy says clearly that

“no additional funding is likely to be needed to move forward: much of what needs to be done is about working differently rather than increasing resources.”

I am sure that that is music to the Treasury’s ear, but I know that the Minister will put her shoulder to the wheel and help.

Without meaning to put it in crude terms, transplants save the NHS money in the long term. The entire transplant programme saves the NHS £316 million a year, which is money that would otherwise be spent on treatment. A successful kidney transplant operation, for example, costs £17,000, with a future cost of some £5,000 a year. A year’s dialysis for a patient with kidney failure, on the other hand, costs £30,800. The NHS blood and transplant service predicts that, for every year a kidney transplant remains functional, it saves the NHS £24,100 per patient while saving the patient’s life. If ever there was a win-win, that is it. From a financial perspective, it makes perfect sense to want to increase the number of organ donations if they can deliver such savings for the NHS, but more importantly, from a personal perspective, if any of us or one of our loved ones needed a transplant, we would do everything possible to ensure that we found a donor. We would move heaven and earth to give our loved one that chance.

I join the call of the organ donation committee at Queen’s hospital in my constituency and others across the country in saying that more needs to be done to increase the number of people on the organ donation register. Sign up; it saves lives.

[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.