Organ Donation Register

Andrew Griffiths Excerpts

Tuesday 17th June 2014 Westminster Hall

[Andrew Griffiths (Burton) (Con)]

It is a great pleasure to serve under your chairmanship, Mr Hollobone. I look forward to your advice throughout this important debate, and I am also grateful to hon. Members for joining me for it today.

I think it was Daniel Defoe who in 1726 said that the only certainties in life are death and taxes. That is true. These are issues that none of us really wants to talk about, but unfortunately, death touches us all. All of us in the Chamber and anyone watching will no doubt have been touched by the loss of a loved one. Many of us will have lost parents. Some will have lost a partner or a child, a son or a daughter. Those are terrible things to cope with—the sense of loss, and the pain and anguish that come with that terrible event.

The idea that, at such a sad and low time, when people’s world collapses, they should have the forethought, integrity and generosity to make the decision to give the organs of their loved one to support the lives of others is a very difficult thing for us all to contemplate, and we would all struggle with that question when asked. However, I have also spoken to people who have done exactly that: they have given the organs of their loved one for the use of others, to give life to others, and they tell me of the incredible meaning that it gives to the traumatic loss of a loved one. It puts that loss into context. In the words of one parent who spoke to me, their son will always live on. That is a tremendous thing for anybody to contemplate.

However, the reality is that in Britain today, some 7,000 people are currently on the waiting list for an organ transplant—right now, they are at home, ill, waiting for the phone to ring, waiting for the hospital to call, waiting for the chance of a new life. It is hard to put ourselves in their situation, but their lives depend on that phone call and on that organ being made available. The figures show that 1,300 of the people on the list will die. They will become too sick to receive a transplant. That is unacceptable, and it is what I hope we can address in today’s debate.

Last year, 1,323 people became organ donors, compared with 1,164 the previous year. That is good news; it is an increase of 13.7%. Transplants from those donors have risen by a third to more than 3,000. Currently, just under a third of the population of the UK are on the organ donation register. On 12 June this year, it was more than 20 million people—20 million people who have sat down and made the choice that after their death they would like to give life to others. I commend them for that choice and I hope that, by raising the issue today, we can encourage more to do the same.

I congratulate both this Government and the previous Government on the successes that have been achieved over recent years. There is a good news story to tell on organ donation. We saw a 50% rise in donor numbers by 2013 on the previous five years. Thanks to the implementation of the recommendations published by the organ donation taskforce in 2008 under the previous Government, transplants from those donors have jumped by a third. However, there is much that we can do, and much more that we must do if we are to give as many of those 7,000 people as we can the opportunity of life.

The numbers on the registers are still too low—pitifully low. As I mentioned earlier, just under a third of the people in the UK are now registered. In the UK, we have 13 donors per 1 million people, which is still one of the lowest rates in Europe. Compare us, for instance, with Spain, which has an opt-in system, rather than an opt-out system. There, the figure is 35 per 1 million people, which is almost three times as high.

So why are people in the UK not signing up? All the evidence shows—the surveys show—that 96% of the population support the principle of organ donation, yet only 30% of the population register, so what has happened to the remaining 66% or so? The rate of sign-up to the register varies dramatically across the UK. The highest sign-up rate to the register is, of course, in Scotland, where 41% of the population is a registered organ donor. I commend them north of the border, but why is it that in England and Wales, those signed up are only 30% and 31% respectively? Why is the figure so much higher north of the border?

I have been told that some of that is attributable to a simple, but hard-hitting television advertising campaign, encouraging people to sign up as a donor, and more importantly, to discuss their decision with their loved ones. The advert is very simple. A man in front of a camera suggests that people watching tell those they are with about their wishes for organ donation—“Right there, right now, look at everybody in the room and tell them. Make sure that your wishes are clear.” It is a hard-hitting advert, which is clear and effective.

I believe that we should have a simple, hard-hitting campaign just like that in England and Wales, and I push the Minister on it. I have previously written to the Secretary of State for Health encouraging him to do exactly that, and I urge the Minister to look again. Perhaps she could tell us whether she has any thoughts on an advertising campaign, because we all recognise that education, and talking about those things and raising awareness are key.

Education is a key way of encouraging people to sign up, and our schools also have a part to play. The “Give and Let Live” resource pack has been used in schools since 2007. It helps teachers to introduce 14 to 16-year-olds to the concept of organ donation, but it is not compulsory on the national curriculum. I am not suggesting that it should be; I recognise that we have to give head teachers the autonomy to make those decisions and to decide what is taught in personal, social, health and economic education lessons. However, raising awareness about the campaign and encouraging teachers to use the resource will encourage young people not only to sign up and get on the organ donor register, but to talk to their parents about it. That is also important. If we can get this conversation going on around the breakfast table between children and their parents, we will have much more chance of not only getting more people to sign up, but getting people to accept the wishes of their loved ones when that difficult question and difficult moment arises.

The use of the Driver and Vehicle Licensing Agency has also been incredibly successful in encouraging people to become organ donors. People are asked when they apply for a driving licence whether they also wish to join the organ donation register. It has been fantastic; over half a million people sign up every year as a result of that simple question, which takes seconds to answer.

I pay tribute to the Cabinet Office’s behavioural insights team—or “the nudge team”, as the press like to call it. They have done a study of this issue. It is a very interesting piece of work about the most effective way to frame the question to encourage people to sign up. Through a pilot that they ran, they found that just a slight change in the wording could lead to an additional 96,000 sign-ups every year. It is incredible how the human mind works and how it is affected by the questions that are asked. It is important that the Government think logically in that way to encourage people to do the right thing.

Of course, there is another important element to this. It is important not just to get people on the register. Also important is what happens once they are on the register and, sadly, in a position to become an organ donor. It is important that we convert people on the register into donors. We must increase the consent rates among the families. UK donation consent rates remain among the lowest in Europe. Four out of 10 families said no to a deceased relative’s organs being donated even when they were on the register. There has been no overall improvement in the consent rate since the organ donation register was introduced in 1994. How to deal with that is, for me, an important question.

It is interesting that as a person—I hope that the Minister would agree—of sound mind and body, I can decide to donate my organs after my death, yet my family can take that decision away from me and I have no choice about that. We do not do that in any other walk of life. We do not say that I can sign my will, saying that I am going to donate all my money to the Conservative party to secure Conservative elections in years to come, and that my family can then override that will, unless they can prove that for some reason I was not of sound mind and body. We must empower people to make the decision for themselves. Yes, it is important that they discuss it with their family, with their loved ones, but we must recognise that, as a free individual, I have the right to choose to donate my organs and no one should be allowed to take that right away from me. I would be interested to know whether the Minister has any thoughts on that.

The aim of the NHS Blood and Transplant strategy, “Taking Organ Transplantation to 2020”, published last year, is to increase the UK’s consent rate for donations from 58.6% to 80%. That is a very big jump. It is an ambitious target, and I hope that we can meet it. In contrast, Spain has the highest consent rate in Europe, at 84%. Last year, the consent rate in the UK increased by only 2%, from 56.5% the year before.

There is a startling difference between what happens when donation has been openly discussed with family members beforehand and what happens when the decision comes as a shock or surprise. In 2013, 94% of families in the UK agreed to an organ donation when their loved one was registered and had discussed their wishes with them. That fell away to 80% when they were on the register but had not discussed that with their family, but most worryingly it fell to 43.5% when the person’s wishes were not known at all. That clearly demonstrates the need not only to get people on the register, but to ensure that people talk about that when they are. We must ensure, under the system as it stands at the moment, that it is not a solitary decision. If we do not encourage people to let their families know about their decision, unfortunately their wishes, their intentions, the good that they wish to do will be denied.

Of the 20 million people in the UK who have put themselves on the organ donation register, only 60% have told their families that they have done so. We can do the maths: the wishes of 40% of the people who have the potential to give new life to another human being are being denied simply because they did not tell their wife, their husband or their partner what they wanted to happen after their death.

In 2012-13, 115 families overruled their relative’s consent for their organs to be used. I understand why they did that. I understand the pressure, the grief, the pain that those people are going through, but we cannot allow a situation in which those 115 deaths were for nothing. Those 115 deaths, with the conversion rate for organ donation, could have given more than 300 people a fresh lease of life. That is what we must focus on.

The UK will never achieve its potential for donation and transplantation when more than 40% of families refuse to allow donation, sometimes against the wishes of the patient. Obviously, when anyone has lost a loved one, it is a difficult and emotional time, but if the deceased had expressed a clear wish to donate their organs, it seems odd that the family can overrule that. That is why I urge the Minister to think about changing the law so that we can make a choice for ourselves to do the right thing and donate our organs.

The Welsh Government, as the Minister will know, are seeking to deal with the issue. From December 2015, they are introducing an opt-out system of presumed consent unless a deceased person had expressed a wish not to donate their organs. A similar system has produced incredible results in Spain. I recognise that this is a hugely controversial issue. It has been characterised as a case of “Who owns your organs?” I recognise that there are deep and heartfelt reasons why people would oppose such a system. I am also aware that previously the Under-Secretary of State for Health, my hon. Friend the Member for Central Suffolk and North Ipswich (Dr Poulter), said that the Government had no plans to introduce it elsewhere in the UK, because of those cultural, ethical and legal issues.

[Glyn Davies (Montgomeryshire) (Con)]

I thank my hon. Friend for allowing me to intervene; I hope that later I will catch your eye, Mr Hollobone, and can make a contribution. This is the first point on which I completely disagree with my hon. Friend. Does he accept that there is no evidence whatever that changing to an opt-out system, even in Spain, which I will deal with in my speech, has delivered more organs? To consider it an ethical issue—the Opposition and many of us base our view on the efficacy of such a change, rather than on the ethical position—is, I think, a mistake.

--- Later in debate ---

[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.

--- Later in debate ---

[Glyn Davies (Montgomeryshire) (Con)]

Thank you, Mr Hollobone, for calling me to speak in this important debate on an issue that has featured strongly in my life. I congratulate my hon. Friend the Member for Burton (Andrew Griffiths) on securing the debate, and on the reasoned and comprehensive way in which he presented his case. I apologise to him and to you, Mr Hollobone; I did not notice that this debate was taking place until about five minutes before it started, so I have not prepared. I apologise if my comments are in any way disjointed.

Donating an organ is just about the greatest gift that anybody can make. It is great to do so on death, but it is perhaps even greater in life, such as when people donate kidneys altruistically. I know several people who have done so, and it is one of the greatest things that one can do. This is a particularly good day to discuss organ donation; the night before last, we watched Erik Compton, who has had two heart transplants, come second in the US Open golf championship. It demonstrates how a transplant can not only give life but allow the recipient to live a life that is completely full and to do the most amazing things. Coming second in the US Open is a pretty amazing thing to have done.

My own interest started with a woman I knew, Trudy, who was a constituent, although I was not the MP then. She had one of the first heart and lung transplants at Papworth. She was a most amazing person. Together, we worked to deliver kidney dialysis in Montgomeryshire, where there was none. A unit has now been approved and built, and is delivering a terrific service. Trudy died a couple of years ago, but the dialysis unit stands as a monument to the fantastic woman that she was.

I am a trustee of the Kidney Wales Foundation. One of my disappointments is that I disagree with the foundation—I am the only trustee who takes this view. I disagree completely with what the Welsh Government have done in changing the law to introduce presumed consent. I have always been a bit disappointed by that. The aim of every trustee—me and all the others, although we disagree—is to increase the number of organ donations and the number of organs available. I have always been driven by the evidence. I have never been influenced by the ethical debates; I am influenced only by where the evidence takes me in terms of how to deliver the most organs. I firmly believe that what the Welsh Government have done will absolutely not deliver more organs, despite what they say.

The only time I ever feel resentful in this sensitive debate is when, as has so often happened on the numerous times when I have been invited to speak about this issue in the media, somebody in desperate need of a new organ is interviewed and I am then asked why I want to prevent them from having an organ. I am utterly appalled by the media’s lack of objectivity and the lack of reference to evidence when dealing with the issue.

We need to move forward as best we can and I want to focus on policy for the future. I will make some specific points. We must look at what happened in Spain. Spain has been referred to in this debate on several occasions and it is a huge success story. However, it is often incorrectly referred to as a country that introduced an opt-out system. That claim is absolutely false, even if the Welsh Government used it as part of the basis for their argument. Despite people writing to them—I have written to them—to tell them that that claim is false, it is still what they base their consultation on. It was a disgrace to conduct a consultation on those terms.

What happened in Spain was that opt-out legislation was introduced in 1979. Twelve months later, it was pretty well abandoned. It remains on the books, but like a lot of laws it has never been implemented. Ten years later the Spanish Government realised that the legislation was not working and they introduced a series of other changes. I believe that it is those changes that we should concentrate on if we are to make a difference.

We should also learn from the organ donation taskforce, which my hon. Friend referred to several times. It did a terrific job under its great chair, Elizabeth Buggins, who is one of the most expert people on this issue. The taskforce considered the issue for two or three years. Everyone assumed that the taskforce would recommend a change to presumed consent. However, when it produced a report, all its members had changed their minds because they had looked at the evidence. The person who has taken over from me in Montgomeryshire believed that changing to presumed consent was a way forward. I said, “Look at the evidence.” As soon as she studied that evidence, she changed her mind.

There are things we should do and that we should learn.

[Andrew Griffiths]

I thank my hon. Friend not only for attending the debate, but for making such an important and heartfelt contribution; I think that we all value that. I understand what he is saying about the opt-in system versus the opt-out system and the need to follow the evidence. However, does he agree that ultimately organ donation should be my choice? It should be the individual’s choice as to whether their organs are used for donation after they die, and nobody else’s choice.

[Glyn Davies]

I thank my hon. Friend for that intervention, because that is a perfectly reasonable position to take. I do not know what the figures are—I do not know how often this situation happens—but I want to know them. I am interested in them because the situation seems wrong.

I accept the point that has been made, but the one counterpoint is that sometimes people can change their minds even though they are carrying an organ donor card. However, if people have joined a campaign, we should assume that that is their view. I would be surprised if there are many instances where a family would overrule an individual’s decision; it would be interesting if the Minister could give us the figures to show how often that happens. If it is a major issue, we should address it; I agree with that point.

The first issue that we must deal with is the specialist nurses for organ donation. That is what made a huge difference in Spain, and it is the area where we really need to concentrate. That is what has made the big difference here. Since the organ donation taskforce reported, the number of donations has increased by 50%, which was the target. That is good news, but it is the specialist nurses who have made the difference.

I spent some time talking to the specialist nurse in Shropshire and indeed he has agreed to visit local schools and to organise discussions and debates. We can use specialist nurses to help people to understand this debate, because it is such a sensitive time to talk to people. Talking to people when the person who perhaps they love most looks as if they are alive, because their bodies are still breathing, even though they are brain-dead, and saying that that person’s support system should be switched off and their organs taken is a hugely traumatic experience. We need trained nurses who have the skills to communicate with people in those difficult circumstances. It is the specialist nurses for organ donation who can do that.

[Andrew Griffiths]

Four out of 10 families refuse consent when they are asked to give it.

[Glyn Davies]

I think that that is a repetition of the previous intervention. However, the point is interesting and I would like the Minister to give us the figures to show to what extent that situation actually happens, and whether a specialist nurse in organ donation was involved in individual cases.

The second thing that is crucial, particularly in Wales, is the number of intensive care beds. A lot of people assume that an organ can be donated when there is a road accident or when somebody is suddenly killed in another way, but there can only be a donation when the person is in an intensive care bed and there is the facility to take a donation. We have a shortage of intensive care beds. The number of such beds in Spain is huge. It is much higher than the number in the UK, and in Wales the number is particularly low. That is the sector where the investment needs to go to ensure that there are intensive care beds. I know that in the last year there have been cases in Wales of organs that were available for donation but they were simply not used because there was not an intensive care bed to allow the donation to happen.

The final point I want to make is, I think, the reason why my hon. Friend the Member for Burton secured this debate today. It is about the issue of awareness. We should put every effort we can into campaigns to have everybody tell their next of kin their view on donation. That is what I say to people in schools when I talk to them; I say to people, “Tell your family what your view is, so that they know clearly.” Carrying an organ donation card is helpful in that respect, because it very much gives an indication of someone’s view. That is why I was interested in the point that my hon. Friend has made in his interventions on me.

What we really need, and the Government can afford it, is a big advertising campaign based on the message, “Tell the family. Make sure your next of kin know your wishes.” If we had such a campaign, we would raise the number of consenting next of kin. If we can increase the number of people in Britain who consent to organ donation to the level it is in Spain, we will not have the thousands of people dying that we have now.