Organ Donation Register

Glyn Davies 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 ---

[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.

--- Later in debate ---

[The Parliamentary Under-Secretary of State for Health (Jane Ellison)]

I will do my best to respond to all the points raised, although I suspect I have the least time of any speaker in the debate. I may prove challenged in that regard, but as colleagues know, I will always follow up afterwards if there is some point which I am unable to get to.

I congratulate my hon. Friend the Member for Burton (Andrew Griffiths) on securing this debate. Just having this debate is part of the answer to the question he posed. The issue can affect us all, and I am grateful for the opportunity to raise its profile and to have the debate ahead of the special week coming up in July. The debate is particularly useful in giving us a chance to reflect on how we can best use that time in Parliament.

I put on record my tribute to those who work in the NHS with such dedication, determination and commitment. They provide such fantastic care, particularly, in the light of what we are talking about, at difficult times in families’ lives. To try to address some of the specific points raised, I will take as read many of the facts and figures put on the record by my hon. Friend and others. We acknowledge those figures. The one thing I want to do is thank everyone who donates and everyone who takes part in the programme. I also pay tribute to local leaders, such as William Saunders, whom my hon. Friend mentioned.

[Mr Peter Bone in the Chair]

We can take it as read that we do not have enough donors, but we have made significant progress. The Government are continuing the work of previous Governments by investing in the donation programme to optimise transplantation. The donation programme was strengthened between 2008 and 2014, increasing donation rates by 63% and transplant rates by 47%. The trend is positive, but today’s debate has explored how we can accelerate progress and address some of the more stubborn problems.

As hon. Members have already suggested, too many people are waiting too long for a suitable organ to be donated, even though organ donation has increased by over 3 million since 2010 to over 20 million. One organ donor can save or transform as many as nine people’s lives. The exchange is not one-for-one; it is an extraordinary opportunity to change many different lives. It is also worth recognising, as the shadow Minister, the hon. Member for Liverpool, Wavertree (Luciana Berger), touched on, that although half a million people die in the UK each year, fewer than 5,000 die in circumstances in which they can become donors: the pool of people is not as big as we often think and is actually relatively small. If I have time, I will discuss how we are considering how the pool might be expanded.

Much of the debate rightly focused on the UK’s consent rate, which is one of the lowest in Europe. Last year, four in 10 families said no to allowing their loved ones’ organs to be donated. In 2012-13, 105 families and in 2013-14 119 families said no even though they knew that their family member was on the organ donation register and wanted to be a donor. That equates to many transplants and many people’s lives that could have been saved or enormously enhanced. Family agreement is a crucial part of the donation process, but because people do not always want to discuss their wishes, relatives tend to say no when in doubt.

I want to explore some of the operational aspects of donation. We all agree that we want more organ donation and more people on the register, but we should consider some of the challenges, in particular the one put forward by my hon. Friend the Member for Burton about why people’s wishes can be overridden. To be clear, we do not need to change the law, which currently protects the right of the individual to be an organ donor. The challenge comes from the complexity and sensitivity of operational issues and not legal issues. Clinicians have a duty of care towards the family. For example—I have every reason to believe that this is based on reality—if it is three in the morning and a clinician is faced with a family who do not want their relative’s organs to be donated and they are crying and clinging to the body, the clinician is likely to go with the family’s wishes.

[Glyn Davies]

Will the Minister give way?

[Jane Ellison]

If my hon. Friend does not mind, may I try to get through this point?

That example highlights a difficult situation for a clinician. Furthermore, if the family’s wishes are overridden and they make a big campaign out of it and express their grief and dissatisfaction publicly, even though they know the wishes of the deceased, the programme as a whole could be put in jeopardy. If the Burton Mail ran the headline, “They took my son’s heart against my wishes”, the impact on those on the donation register and on families who want to have that conversation could be significant. The issues are sensitive, but it is not for lack of will that people do not ensure that an individual’s wishes are respected. It is important to understand the pressure that clinicians are under in those difficult circumstances. I want to put it on the record that, once retrieved from a body, a heart needs to be used within six hours, livers and lungs within 12 hours and kidneys within approximately 24 hours. The decisions have to be made quickly. It is not like the reading of a will, which can take place weeks, months or years later once calm has been restored and people are more reflective. Such decisions must be made on the spot.

I hope that that provides a little context as to why clinicians face challenges. Most organ donors are not on the register, so the key thing is to change the culture around how we talk about the end of life and to make donation a natural thing for everyone to allow. For some people and communities, however, that is not easy.

I pay tribute to the specialist nurses for organ donation—the lovely SN-ODs—for their wonderful work. There is no doubt that having trained people who can have conversations at sensitive times is absolutely critical. I note the challenge about the number of specialist nurses drawn from minority and ethnic communities, who we know make a difference, and I will discuss it with NHS England and NHS Blood and Transplant.

Our strategy is evolutionary, but that does not mean that we cannot make big leaps forward in some areas. The nudge work to get more people to sign up has been extraordinary in some cases. In one of the largest public sector studies of its kind, over 1 million people took part to test eight different ways of asking people to join the register. That has resulted in some significant gains, as was mentioned by the shadow Minister. There is a range of other measures, including using social media and other points of contact. There is a schools project, “Give and Let Live”. Getting teenagers to discuss the subject with their families and become thought leaders is important. As a result of the work going on in schools, young people are often good at leading conversations within the family.

National transplant week is coming up. I do not have time to go into the details, but many things are happening around the theme of “Spell it out”. It is all about the conversation and about getting family members to talk to each other. Given the interest—I am sure that Members of Parliament can help—I will attempt to write to all colleagues with more details about the week and how we can play our part and do our bit in our constituencies to lead the conversation. For example, my hon. Friend the Member for Burton visited a local mosque to see whether he could help to lead the conversation there, something which in many cases is far more effective than top-down campaigns. I do, however, note the challenges around some of the big, high-profile, in-your-face campaigns that have been run in places such as Scotland.

I want to assure the hon. Member for Strangford (Jim Shannon) and others that work is going on to consider widening the pool of donors. The Royal College of Paediatrics and Child Health is doing some research on babies—a sensitive subject—to see what can be done about the challenge of child donation. The Advisory Committee on the Safety of Blood, Tissues and Organs is reviewing the evidence on the outcomes of UK transplants of organs from donors who had cancer or a history of cancer. We are beginning to learn more about the possibility of successful donation even when someone has suffered from cancer, and SaBTO is drawing up a series of recommendations to help transplant surgeons.

It is also worth saying that, even in Wales and in Northern Ireland were the private Member’s Bill to succeed, it is still the case that a family can override a decision in the circumstances that I have described. We must be sensitive to the circumstances in which decisions are being taken. In Wales, relatives will still be asked to support the donation and can object if they know that the deceased would not have consented.

In the remaining minute or so, I want to say that it is absolutely right for Members to place concerns on the record about donation from black, Asian and minority ethnic communities, where the refusal rate to donation is nearly 80% compared with around 40% nationally, which is significant. My Department supports the National Black Asian and Minority Ethnic Transplant Alliance, which does great work in this area, including, for example, on consent rates. Subject to parliamentary business, I intend to visit Birmingham next week to launch a new project to train peer educators from the Pakistani Muslim community in Birmingham. We are training community champions there to go out and do some of that work. I am happy to talk to colleagues to see whether we can replicate that elsewhere. There are some significant cultural, rather than doctrinal, reasons why—

[Glyn Davies]

rose—

[Jane Ellison]

I do not think that I will be able to give way to my hon. Friend. I hope that he will forgive me. We can perhaps speak immediately after the debate.

In conclusion, we can do many things to encourage more people to register. We are absolutely open to ideas from hon. Members on both sides of the House and all parts of the country and the world. We review and are led by the evidence, as my hon. Friend said. Debates such as this provide an excellent opportunity to raise the issue’s profile and we can hopefully do more in Parliament as national transplant week approaches. I will end by paying tribute to the great work of the excellent NHS Blood and Transplant.