Organ Transplants

Kate Green Excerpts

Wednesday 17th July 2013 Commons Chamber

[Kate Green (Stretford and Urmston) (Lab)]

Last week was national transplant week, and the NHS highlighted an important campaign to increase organ donation. Donor rates have, pleasingly, increased by 50% since 2008, but although almost every one of us would accept a donated organ if we needed a transplant, only 57% of relatives agree to organs being retrieved. However, that proportion rockets to 95% if the deceased has discussed his or her wishes in advance with family members. Some 19.7 million of us are on the organ donor register, but three people still die each day while waiting for a transplant, so I wholeheartedly support the efforts of NHS Blood and Transplant to increase the number of organs donated. I add my voice to those who advocate an opt-out scheme.

Having met and talked to transplant survivors, I can testify to the immense gratitude that they feel to donors who have literally given them a new lease of life, but donation is only half the story. Although the selection and allocation of organs for transplant is much less widely discussed, it is also a complex and controversial issue.

A few weeks ago, I met my constituent, 18-year-old Natalie McCusker, who had been on the waiting list for a lung transplant for 19 months. She described to me what it is like to live in a state of limbo waiting for a suitable transplant. She has been too unwell to go to school, although her school arranged for her to participate in classes via Skype. She wanted to study sciences, but could not because oxygen cylinders and science experiments do not mix. As a young girl, she had enjoyed and been very good at sport, but that has become impossible since she became too ill. The effects on her family have also been profound; for example, her mum has taken a five-year career break.

Natalie was first told that she would need a transplant when she was 15. She initially hoped it would be carried out at Great Ormond Street children’s hospital, but people transfer to the adult register at the age of 16, so she was advised to delay transplant surgery until she moved to the adult list.

When Natalie first moved on to the adult system, she was able to access treatments that are deemed unsuitable for children. At first her condition improved, but seven weeks after taking her GCSEs, she became much more unwell. She was eventually listed for a transplant in November 2011. I completely accept that there are different clinical demands when treating children and adults, and that there is a need for separate systems. However, from the patient’s point of view, it seems that the transition may lengthen waiting times, and it also means that a new relationship of trust and confidence must be built up between the patient and new teams of clinicians.

[Jim Shannon (Strangford) (DUP)]

I am grateful to the hon. Lady for bringing the matter to the House. I have a particular interest in organ transplants and donation because I have carried a card since I have been able to do so. In Northern Ireland, we carried out about eight transplant operations in 2008, but now in 2013 we carry out more than 50 a year—almost one a week. That has happened not only because those who carry the card pass on their organs when they die, but because we have the largest number of live donors in the whole of the United Kingdom—far above the average for England and Wales. If more effort was made on live donors, it could help to address the problem faced by the hon. Lady’s constituent. The evidence from Northern Ireland indicates that the longer one is on a donor list, the less one’s health deteriorates, so perhaps the Minister will address that point when she responds to the debate.

[Kate Green]

I note with interest what the hon. Gentleman says and I am sure that the Minister will want to respond to that point. Obviously, we would want to explore all methods of increasing the number of donor organs available. We should bear it in mind that one person may donate up to nine organs following their death.

I was talking about the crucial importance of a sense of trust and confidence between patients and clinicians. For a course of treatment as massive and life-changing as transplant surgery, that is certainly no trivial matter. I cannot suggest any easy answer to that, but my first point to the Minister is to ask her to consider ways in which the disruption of the transition process between childhood treatment and the adult list could be minimised, with a particular interest in ensuring that waiting times are not extended unnecessarily.

There are other concerns relating to the allocation of organs for those on the waiting list. The current process for allocating hearts and lungs for transplant is based on dividing the country into a number of zones. That means that if someone lives in one zone and a suitable organ becomes available in another, they might not receive it simply because they are on the wrong waiting list. In following a rigid zonal approach, important considerations of equity across the country could be neglected. A patient can be registered on only one list, and the result can be a postcode lottery for treatment.

Patients in my region, the north-west—it is your region, too, Mr Deputy Speaker—wait the longest in the country for lung transplants: over 400 days in Manchester, compared with under 200 in Cambridge. According to a written answer I received from the Minister on 15 May, between April 2008 and March 2011 62.2% of patients in the north-west waited more than six months for a lung transplant, compared with an England average of 47.3%, and 23.2% of patients in the north-west waited more than 18 months for such a transplant, compared with an England average of 15.8%. The north-west also has among the highest death rates for those on the waiting list for a lung transplant—between 20% and 30%.

I believe that we need to look again at the operation of the zonal system so as to get the balance right between the underlying issues of urgency, geographical proximity between donors and recipients, and waiting times. The most urgent cases should clearly take priority. One approach could be to treat urgent cases on a national basis and, if no urgent case exists, to allocate on a zonal basis. If that approach were adopted, zones would need to be more dynamic. In other words, if the waiting list grew the zone would also expand to give access to more organs.

More radically, we could move to a fully national allocation system, whereby patients could be matched with suitable organs across the country. I recognise that geographical considerations are of course important, not least if the ischemia time, the time between organ retrieval and transplant, is integral to the success of the operation. For heart transplants, in particular, it very often is, and the system for heart transplants in fact appears to work effectively. That seems to be much less true for lung transplants. Equity is also a consideration. It is of course important to have regard to the interests of those who have been on the waiting list the longest, and that really should not be dependent on where someone lives and which list they are on.

I understand that the NHS is now considering whether to move to a national registration system, which would be fairer to patients in regions such as ours. In the US and much of Europe this approach has already been adopted or is being considered. The evidence suggests that it could achieve greater equity without any increase in mortality rates, or indeed cost.

So what is the block? Inertia and convenience undoubtedly play a part. I acknowledge that there is already better sharing of organs between zones when a suitable match cannot be achieved within a zone, but it seems that some transplant centres might be more interested in building up the scale of their own activities rather than progressing the idea of a national scheme that could deliver greater equity for all patients. Progress towards delivering a national list scheme in this country is proving painfully slow.

What steps are being taken to make progress towards a more equitable national scheme of allocation, and what is the Minister’s attitude to the development of such a scheme? What work, if any, is being done to develop a national approach, and over what time scale might progress be expected? How best can we make use of technology and the sharing of data to facilitate the allocation of organs between zones? What learning and best practice can be adopted from other countries? What incentives would encourage a more equitable system of allocation between transplant centres and protect or improve outcomes for patients?

I am very pleased to report that Natalie had a successful lung transplant two weeks ago. She is growing stronger every day and it is hoped that she will be well enough to return home next week. She and her family are of course absolutely delighted and hugely appreciative of the treatment she received from the transplant team at Wythenshawe hospital. However, for 19 months, while waiting for her transplant, her life was put on hold. Perhaps that wait could have been shorter if she had not been restricted to a single zonal waiting list. Yesterday she wrote to me to say how pleased she is that this debate is taking place in Parliament, which she says she hopes will help “to achieve something that will in future benefit the thousands of people that will need life saving transplants.”

I hope that the Minister will be prepared to commit tonight to working towards a national system of organ allocation that offers equity of access to organs for transplantation and rapid progress towards achieving this. I am very grateful for the opportunity to raise this matter and look forward to her response.

[The Parliamentary Under-Secretary of State for Health (Anna Soubry)]

Let me begin by congratulating the hon. Member for Stretford and Urmston (Kate Green) on securing this debate, raising this important issue, and enabling us to discuss it for this very short period. It is not really a debate but a number of questions quite properly asked, no doubt many of which I will not answer, through no unwillingness on my part but because, as I always say, the usual rules apply. However, all questions will be answered, if not by me tonight then certainly by way of a letter. I thank the hon. Member for Strangford (Jim Shannon) for his helpful and interesting contribution. He has been good enough to provide me with a clipping. I believe that it is about kidney transplants and kidney donations, and I will make further inquiries.

As you will know and understand, Mr Deputy Speaker, this matter has come up by way of the fact that hon. Lady, as she explained, has a constituent, Natalie McCusker, who has had a lung transplant. We are all delighted that she was able to have that lung transplant.

As we know, the donation of organs is sometimes from a living source, to put it in crude terms. There are many examples of people who have made the most amazing sacrifices, often within families, to supply a kidney to a loved one so that they can live. There is, of course, the whole additional subject of what happens on death and the wishes of somebody in relation to their organs, and the absolutely amazing difference that that generosity after life can make to people. No doubt Natalie is a very fine example of that, and no doubt she and her family are profoundly grateful to the person who had the good sense to indicate that they were willing that on their death their organs would be donated. Then there is the great and often very emotional matter of the family deciding that they are all content for this to happen. There is nothing worse than when someone is taken from us when they die. It is very difficult for anyone in the medical profession—we have nurses who are specially trained in this—to approach the family in those profoundly difficult times and discuss the possibility of organ donation. The work of those nurses and other medical professionals is one of the reasons we have seen an increase in organ donation.

We all know the benefits of transplants and know that we need to do more to increase the number of organs donated. That would give many more people the opportunity to benefit from a transplant that could save their life or significantly improve the quality of their life. About 8,000 people are listed on the national transplant list waiting for a transplant. Many more could be listed if more donated organs were available for transplant. Many people wait months and years for a phone call telling them that a suitable organ has been donated and calling them in for a transplant. I am aware through my work as a Minister of some of those families and their anguish as they literally sit around waiting for that phone call, especially when it is a child who so desperately needs the transplant to, in effect, save or improve the quality of their life. For some, that phone call never comes and about three people—adults and children—die every day waiting for a transplant that could have saved their lives.

Given that the number of people needing organ transplants in the United Kingdom is greater than the number of donor organs available, there has to be a system to ensure that patients are treated equitably and that donated organs are allocated in a fair and unbiased way. Allocation is based on the patient’s need and the importance of achieving the closest possible match between donor and recipient, which is often very difficult.

All patients waiting for transplants are registered on the national transplant database. Rules for allocating organs are determined by the medical profession in consultation with other health professionals in health departments and specialist solid organ advisory groups. The blood group, age and size of both the donor and the recipient are all taken into account to ensure the best possible match for each patient, and the cardiothoracic advisory group is currently looking at improving the allocation of donated lungs to help to ensure equity and better outcomes for patients.

At present, lungs are allocated to the transplant centre based on the location of the donor, as the hon. Member for Stretford and Urmston said. The transplant centre will decide whether or not to accept the lungs and will select the most appropriate recipient. NHS Blood and Transplant is working with transplant centres to consider whether the current allocation system can be improved. It is considering whether it would be worth while implementing a national allocation scheme offering lungs and other organs nationally, rather than by centre. Other models are also being considered. NHS Blood and Transplant monitors the current allocation system closely to ensure that there is equity of access across the UK, and a recent analysis showed no statistical differences in outcomes across the UK in relation to lung transplant centres.

[Kate Green]

I appreciate that the Minister may not immediately know the answer to this, but does the equity of outcome apply not just to survival rates, but to waiting times?

[Anna Soubry]

As the hon. Lady has anticipated, I do not have the answer to that question in my brief, but I will make sure that she receives a proper answer.

Over the past five years, we have been strengthening the donation infrastructure by implementing the 14 recommendations of the organ donation taskforce, which were published in 2008. Is it not nice that in this sort of debate we can pay tribute to another Government of a different political persuasion? We are all united on this issue; it is not a party political issue and it is always a pleasure to take part in these sorts of debates.

The number of donor co-ordinators across the United Kingdom has nearly doubled. They are working closely with intensive care clinicians and families to identify potential donors and obtain consent. As I have said, it is difficult work but, goodness me, what a difference it can make when it is successful.

We have appointed clinical leads and established donation committees and chairmen in all trusts. This has driven improvement in hospitals, optimising the potential for organ donation. I am delighted that we have achieved an increase of 50% in organ donor rates and of 30% in transplant rates over the past five years, helping many more people to have the transplant that they so desperately need. We need to do more, however, to enable many more people like Natalie to receive the organ transplant that in many circumstances will save or enhance their life.

On 11 July, NHS Blood and Transplant published the new UK strategy for organ donation and transplantation. “Taking Organ Transplantation to 2020” sets the agenda for increasing organ donation and transplant rates to world-class standards over the next seven years by aiming to improve consent rates to organ donation to more than 80%—they are currently 57%—and transplant more organs and increase the number of people receiving an organ. The strategy calls for a revolution in public attitudes and behaviours, and emphasises the importance of individuals and families agreeing to donation. That important work needs to take place irrespective of someone’s background, ethnicity, religion, faith or whatever else. We need to ensure that more people in all parts of society sign up to donate their organs and that we are able to persuade people’s families to allow their organs to be donated upon death.