Organ Donation Register

Jane Ellison Excerpts

Tuesday 17th June 2014 Westminster Hall

[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.