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Organ Donation

Volume 473: debated on Wednesday 19 March 2008

Motion made, and Question proposed, That this House do now adjourn.—[Tony Cunningham.]

I am grateful for the opportunity to speak tonight. I am increasingly of the opinion that Adjournment debates are like buses—you wait for one a long time, then two or three come along at once. The House may be aware that I secured an Adjournment debate in Westminster Hall last week on the important issue of the banning of looped blind cords. Tonight, I wish to raise another important issue, and although I am certainly not complaining about the opportunity I have been given, some of my staff are.

To get down to business, tonight’s debate is on an important issue. It has been in the headlines recently, but I am concerned we should not allow the sometimes divisive issue of organ donation to slip off the radar. I have been working closely with a local paper in my constituency, The Alloa Advertiser, since the end of January to try to promote the positive benefits of an opt-out system, and to encourage donors to sign up to the existing system to ensure that those in need of organs are given the best possible chance of life. As I said a few moments ago, there is a national focus on the issue, but as with everything, it is transient. We need to keep focused on this issue, as people’s lives depend on it.

Perhaps I should spend a little time outlining why we have a severe shortage of organs. We are living longer, and conditions that would have killed us some years ago are managed and controlled. That is a good thing, but it creates a twofold pressure. First, some of the conditions with which we live require transplants and, secondly, as we live longer, fewer people are dying, which in itself creates a reduction in the number of organs for transplant. In addition, road deaths are less than half what they were in the 1970s despite, as we all know, a great increase in the numbers of cars and, indeed, a population increase. It is great that our roads and our cars are safer—and we must strive to make them even safer—but the statistics highlight a great pressure on available organs.

I believe the current system is too restrictive, as it does not meet the increasing demands placed on it. Quite simply, the organ donor rate in the UK is unacceptably low, with most European countries having a much higher rate than us—some of them twice or even three times the UK rate. We have reached a point where there is public demand for change. I believe that there is a desire for change in the House, too, which is demonstrated by early-day motion 967 in my name, which has attracted the signatures of 52 fellow Members. There are more than 7,000 people in the UK on waiting lists for organ donations, and more than 400 people die each year still waiting—more than one person a day. In Clackmannanshire, which forms part of my seat, four people have died in the past five years waiting for transplants. Bodies are buried or cremated complete with organs that could have been used to save lives, not necessarily because the deceased objected to donation, but simply because they never got round to signing up to the organ donor register or informing their relatives of their wishes.

As my hon. Friend knows, I used to work in the health service, and it was traumatic for relatives to hear us explain the death of someone in a road traffic accident or of someone who suffered a coronary, and then to hear us ask whether we could take organs for the benefit of other individuals. That is unacceptable in this day and age.

I thank my hon. Friend for his comments. What he says is true and important, and I shall come on to explain how a soft opt-out system would make the initial conversation between the organ donation co-ordinators and the bereaved family more palatable. A new soft opt-out system would go a long way towards alleviating the stress my hon. Friend mentions.

While many of us say we would be prepared to donate our organs, not many of us have done anything about it. Studies have shown that 90 per cent. of the population support organ donation, yet only 25 per cent. are registered as donors. In Clackmannanshire, the figures reveal that 13,497 people are on the organ donation register, but if we equate that to the 90 per cent. statistic there are still about 30,000 potential recruits. People are more likely to need a transplant than they are to become an organ donor. Given that this research shows that the majority of people would be willing to donate, presuming consent rather than presuming objection is more likely to achieve the aim of respecting the wishes of the deceased person.

I have had an interest in this area for a while, and certainly long before I entered Parliament. Colleagues in the Scottish Parliament have campaigned relentlessly on the issue, particularly Dr. Richard Simpson and Lord Foulkes. I carry an organ donor card, but I have been concerned for a while that not enough has been done to encourage people to sign up and to make people aware of the desperate need for organs in the UK. For example, my wife, who works in the NHS, would be very willing for her organs to be used, but she has not got—and is unlikely ever to go about signing up for—a donor card. I suspect there are many people in that situation.

The lack of awareness of the demand for organs must also be addressed for the sake of the thousands of people on the waiting list. I have met a couple of people in my constituency who are on the list. Sarah Murray from Sauchie is 23 years old and suffers from cystic fibrosis. She has been waiting 18 months—well above the average waiting time—for a double lung transplant, and she told me about the difficulties that she daily faces. Simple tasks such as housework or walking the distance between two lamp posts are difficult, if not impossible. She has lived with this disease all her life, and it has affected her schooling and means she is unable to work. She has not had the opportunities that most of the rest of us have had. She may have gone on to university. Who knows what potential might have been released? A transplant will release that potential.

I spoke last week in my other Adjournment debate to which I referred earlier about wasted potential, and here I find myself raising it again. The decisions we make on issues such as organ donation will allow so many of our young people to realise their potential. Sarah has always wanted to be a nurse, but has been held back by her condition. A transplant would give Sarah the opportunity to study nursing and pay back to the very system that saved her.

I am glad that the Government are making moves to tackle the chronic shortage of organ donors by welcoming the findings of the recent organ donation taskforce report. Let me be clear: I also support the report’s findings, but I firmly believe we need to move to an opt-out system as soon as possible. The report raised some important issues, and over the past few weeks I have been questioning the Department on a wide range of matters relating to organ donation. I hope the Minister will be able to address some of them. I know that the Prime Minister has agreed in principle to adopt the report’s recommendations, which if implemented could see a 50 per cent. increase in UK organ donors. However, changes may be some months away, so I believe it is important that we lay down some strong foundations now.

There should also be an increased role for GPs in discussing with patients the option of organ donation. I have been visiting my GP for over 50 years and not once has the issue been discussed. I know that this must be handled carefully, but I firmly believe that we must address the role of GPs.

Funding of £11 million has been made available for 2008-09, with significant additional funding identified for subsequent years. In response to a written question on 29 February the Minister informed me that discussion with stakeholders has started to agree what further action, such as research, public awareness campaigns, training and work force requirements, would be needed to enable each recommendation to be implemented. I hope that the Minister can tell the House in greater detail how the discussions are progressing.

We must couple the implementation of an opt-out system with the recruitment of extra transplant co-ordinators to ensure that all suitable organs are harvested. The taskforce report has called for 100 co-ordinators to help relieve the strain on the existing co-ordinators, many of whom work shifts in excess of 24 hours without a break.

If a change is to take place, we need to ensure that an adequate level of investment and expertise is utilised. Unless we have the people who are properly trained, and transplant co-ordinators who are available 24 hours a day, we will find ourselves in a very difficult position.

May I take the opportunity to pay tribute to the wonderful work of the late John Cox, his wife Rosemary and their daughter Christine following the death of Peter Cox? They were instrumental in persuading the then Government to set up the national register of donors. One of the reasons insufficient organs are available is that even if the deceased has expressly consented to organ donation, his or her relatives can posthumously block the donation and refuse consent. The relatives’ power of veto should be reconsidered in order to increase the supply of organs.

I thank my hon. Friend for his remarks. I favour a soft opt-out where the family retains the ability to be consulted, but where we come at it from a position of presumed consent as opposed to a presumed lack of consent. Countries such as Austria operate the system that he mentions. It has a high level of uptake and availability of organ donations, so he makes a strong argument.

There is a need for investment in the short term, but the sooner the extra money is found, the better, as there will be long-term savings for the national health service and improvements in people’s quality of life. I recognise that increased funding for transplants has been allocated by the Government: heart and lung funding has increased by almost £8 million since 2002; liver funding has almost doubled since 1997; and pancreas transplant services’ funding has more than doubled since 2004 to more than £8 million. That investment is very welcome.

Last month, I visited the renal unit at Falkirk and District royal infirmary and found out that it costs the NHS on average £400 per treatment. If people require three treatments per week, as my constituent Anne Duncombe does, we are talking about more than £1,000 a week, possibly for many years. The cost benefit of a kidney transplant is staggering—the NHS is £241,000 better off over a 10-year period for every transplant patient. No one has to be an economist to see the real financial value to the NHS of a transplant, never mind the ability of the recipient to work, pay taxes and improve their quality of life.

Dialysis is not just a financial burden; it can often mean 18 to 20 hours per week to people if time for treatment, travelling and so on is taken into account. The renal unit at Falkirk and District royal infirmary is treating more and more patients from throughout the Forth valley owing to the ever-increasing demand for organs. The unit has almost doubled in size since it opened in 1999. It now treats 100 dialysis patients, but only one in four of them each year receive the kidney that they need.

A lot of money could be allocated elsewhere if a successful opt-out system were launched. Each region should have a dedicated team ready to operate when needed to remove organs, and there should also be a national database prioritising organs that are urgently required, particularly for children. Another important point is that we must ensure that any attempts at political separation in the UK do not detract from the need to have a UK-wide solution to the organ donation issue.

Like me, my hon. Friend represents a Scottish constituency. I am sure that he is fully aware that health is devolved to the Scottish Executive. Can he tell us what their view is on his proposals?

I thank my hon. Friend for his comments. The transplant situation in Scotland is governed by the Human Tissue (Scotland) Act 2006. There are noises from the Scottish Executive that they are minded to favour a soft opt-out, but we will have to wait to see whether they deliver. The situation in the rest of the UK is governed by an Act passed in 2004, and my hon. Friend will note the two-year disparity. We cannot allow such a disparity if the situation is changed in the rest of the UK and Scotland is left behind.

Limiting the availability of organs to one region would have some serious implications. As with so many matters, we are stronger as part of the Union, and in this case a UK-wide system increases the likelihood of an organ becoming available. Who will be the one to tell my constituents that their chance of receiving an organ transplant has been drastically cut, because we can harvest them only from Scotland? I hope that no one ever has to utter such words.

Therefore I am pleased that the NHS Blood and Transplant Authority has commissioned work to develop and design an electronic system for offering donor organs throughout the United Kingdom. I understand from the Department’s reply to one of my written questions that this system will be ready to go live in September this year. I am sure that the Minister will agree with me that this is an important step forward.

The organ donation taskforce took note of the systems being implemented by some of our European neighbours, such as Spain, where a change in the law and the necessary reform in the health service has boosted the number of organs available for transplant. The organ donation rate in Spain is 35 per cent., compared with 13 per cent. here in the UK.

It is important here to distinguish between the number of people carrying cards and on the register, which is 25 per cent., and the number of organs used in transplant, which is 13 per cent. There could be many explanations for this disparity. We may die in the “wrong way”, organs from potential donors may be incompatible with those in need at that time, and many people carrying donor cards may be young people who are encouraged to sign up when they apply for their driving licence. Their organs are unlikely to be available for many years to come. So a 25 per cent. base of card-carrying donors delivers only half that number of organs for transplant.

Hard-hitting campaigns are being launched here in the UK, particularly the “Live or die? You choose” campaign, which is on our television screens now. I praise the work of the NHS Blood and Transplant Authority, but there is a limit to how effective such campaigns can be when our organ donation system is so fractured.

Every hon. Member will know that changes in the law can often be slow and cumbersome, but the longer we wait, the more lives we put at risk. I encourage all hon. Members to put this message across in their local media, so that we can raise the profile of this issue. Members could promote their constituency office as a place where people could come along to sign up to become organ donors; launch campaigns in the local press and highlight the plight of those waiting for organs; go out and meet those in their constituency who are waiting for a transplant; and look at the facilities and speak with staff at their local hospital. It is only by putting across the human side that we will encourage more people to come forward as organ donors. We need to raise awareness and encourage the public to sign up to help others in need by giving them the gift of life.

Some hon. Members will be aware that in my Adjournment debate last week I highlighted the issue of the dangers associated with looped blind cords and the tragic death of a toddler in my constituency, Muireann McLaughlin. Muireann’s parents, at a time of tremendous grief, decided to help to give the gift of life to another when two of Muireann’s heart valves were donated. That ties in with recommendation 12 made by the organ donation taskforce that there should be some way to recognise the brave decisions of parents in such situations.

As with any issue, there is always an opposing view. I understand and sympathise with that view, and whether it is held on moral or religious grounds it is equally valid. There should be a database of people who do not want their organs to be used for transplant, giving people the opportunity to opt out. If someone felt strongly enough, I am certain they would ensure their name was on the database. It sounds tough and harsh, but so are the deaths of 400 people per year, many of whom are children.

It is not a case of nationalising organs, as has been suggested in the past. People waiting for organs get very angry at those who take that view. It is a case of trying to save lives using all means possible. With a soft opt-out, donation would become the default position. The introduction of a soft system of presumed consent would represent a shift in emphasis in favour of donation without major changes to practice. It would respect the wishes of potential donors and the sensitivities of their families.

To sum up, I hope that I have put a case that outlines the need for a change to our system of organ donation. I urge hon. Members to sign early-day motion 967, which is in my name, and urge the Government to move to an opt-out system with the necessary structural changes in the service as quickly as possible. There are enough organs in the UK to satisfy demand, and it is simply the system that holds us back from transplanting them into those who need them. It is my hope that the Minister will address the issues I have raised, and also propose some time scales for when we can look to take the organ donation taskforce’s proposals forward.

As I mentioned earlier, the longer we wait the more lives we put at risk. As a responsible country, we cannot and should not allow this.

I congratulate my hon. Friend the Member for Ochil and South Perthshire (Gordon Banks) on securing this evening’s debate. I commend the hard work and dedication that he continues to demonstrate in his constituency and as an advocate for the issue.

I hope that in the time that I have to speak, I can reassure my hon. Friend on the issues that he raised. Transplantation is one of medicine’s great success stories. As my hon. Friend knows, the Government are absolutely committed to increasing the number of organs available for transplantation so that many more people can benefit from that life-saving procedure and, as he so graphically said, release the potential of the individuals who have that potential thwarted because of the limitations caused by their being unable to secure a transplant.

The current situation, whereby 8,000 individuals require a transplant but only 3,000 operations a year are carried out because of the lack of available organs, reflects not only the points made by my hon. Friend but those made by my hon. Friend the Member for Livingston (Mr. Devine), who illustrated from his professional experience the added difficulties and strains in the health service. The situation is worse than that. Some 4,000 patients are never put on the list. Practitioners are reluctant to list patients whom they believe are never likely to receive a suitable organ because there is such a limited supply of organs for transplant.

I, too, want to pay tribute to the constituents of my hon. Friend the Member for Wolverhampton, South-West (Rob Marris)—the late John Cox and his wife Rosemary—who have done so much to advance the achievement of a sensible situation in the UK.

The gap highlighted between the number of those who require transplants and the number of available organs led my right hon. Friend the Member for Doncaster, Central (Ms Winterton), when she was Health Minister, to set up the organ donation taskforce. The taskforce’s membership was drawn from a wide range of specialties and interests, including media, diversity issues and the voluntary sector. It undertook a thorough and productive period of research to identify the barriers to organ donation and how they might be overcome. Like my hon. Friends, I carried a card for a long time and I am on the register. So few people appreciate the simplicity of the registration process and how it makes organs available.

The taskforce looked at evidence from Europe and the US, but especially from Spain. The evidence from Spain was very important because, as my hon. Friend the Member for Ochil and South Perthshire noted, Spain has the highest rate of organ donation in the world, at around 33 per million people. In contrast, the UK has one of the lowest donation rates in Europe.

In addition, many aspects of the Spanish model have been successfully imported to other areas, such as northern Italy and certain parts of South America. It is therefore clear that we need to look at the formula that is used in Spain.

The taskforce has recommended that the UK adopt the sort of broad-based approach to be found in Spain. It said that there needs to be investment in infrastructure and that the UK must ensure it maximises its potential for donation rates. That includes establishing a UK-wide organ donor organisation as part of the NHS blood and transplant service, a point that my hon. Friend the Member for Ochil and South Perthshire made.

The taskforce also said that we needed a dedicated and strengthened network of organ retrieval teams to work with hospitals’ critical care teams. It added that the number of front-line co-ordinators working with families and the hospitals that donate and receive organs should be doubled to around 100—exactly the point made by my hon. Friend the Member for Livingston. Moreover, it said that all parts of the NHS should embrace organ donation as usual business, not as an unusual event, and that is precisely the point that my hon. Friend made about GPs.

Other recommendations from the taskforce were that donor activity in all health trusts should be monitored, and that all clinical and nursing staff likely to be involved in treating potential organ donors should receive mandatory training in donation.

My hon. Friend the Member for Ochil and South Perthshire rightly spoke about funding, and the House will know that my right hon. Friend the Secretary of State for Health announced on 16 January that all the recommendations from the taskforce would be accepted. To enable their implementation, extra funding of £11 million has been made available for 2008-09, with more to follow in future years.

Organ donation is an area of medicine that necessitates a high degree of co-ordination across the UK. For example, an organ donated in Glasgow, Cardiff or Belfast may be transplanted into a patient in London, or vice versa. It is therefore essential that a UK-wide approach is maintained, and that is the strong message that we have received from the taskforce. All the Ministers in the four UK health Departments have welcomed the taskforce’s recommendations, and are implementing them.

My hon. Friend the Member for Ochil and South Perthshire rightly touched on the need to oversee the delivery of the recommendations. I am therefore pleased to announce that Professor Sir Bruce Keogh, the medical director of the NHS, has agreed to head the group tasked with taking forward their implementation. We have already held discussions with a number of organisations so that early progress can be made.

My hon. Friend mentioned matters to do with presumed consent that are outside the taskforce’s original remit. Under the current system, as my hon. Friend the Member for Wolverhampton, South-West noted, families do not have a legal right of veto over a decision made by a donor when he or she was alive. Any system that we put in place must be aimed at helping people who wish to be donors to have their wish carried out, and that is something that will need to be taken into consideration.

Clearly, the taskforce’s work does not end there. The UK’s chief medical officers will need to take the work forward, and my right hon. Friend the Secretary of State has made it clear that he has asked the taskforce to consider the potential impact of introducing an opt-out system for organ donation. My right hon. Friend the Prime Minister has said that he thinks now is the time for a public debate on the matter, and that we should move forward.

I have sympathy with those who want a change to the opt-out system as a step towards putting into practice the wishes of the many people who we know support the idea of donation in principle. It is important that when we develop that idea we find ways to move towards a system that helps people to donate and helps their wishes to be fulfilled, but also takes into consideration the views of others who may not wish to be covered by presumed consent. That needs to be done delicately, swiftly, and accurately if we are to meet the objectives of my hon. Friends present today.

I am delighted that all UK Governments have been able to commit to taking forward the recommendations. I am delighted that the taskforce, with its considerable expertise, is turning its attention to an opt-out system of presumed consent. Like my hon. Friend the Member for Ochil and South Perthshire, I look forward to the day, which I hope will come soon, when we have an agreed procedure that satisfies all, regardless of their views on organ donation, and that ensures that we match the Spanish rates and so help people to live fulfilled lives, rather than lives that are wasted because organs are not available. I commend the work of my hon. Friends to the House.

Question put and agreed to.

Adjourned accordingly at one minute past Eight o’clock.