The Parliamentary Under-Secretary of State for Health (Jane Ellison)
I congratulate the hon. Member for Bristol East (Kerry McCarthy) on securing this debate. She made a wide-ranging speech demonstrating a very deep knowledge of this subject. She alluded to her own family connection to this condition. Obviously, I convey my best wishes to her constituents, particularly to her family and especially to her niece, who is, as she described, suffering from the condition.
I commend the hon. Lady’s recent achievement in raising funds for the Cystic Fibrosis Trust. That is an excellent achievement for an excellent charity; she is right to be generous in paying tribute to it. I am sure she will be interested to know that in recent weeks many Members of Parliament have contacted me in support of the trust’s current campaign on behalf of the 10,000 or so people in the UK who battle with the everyday challenge, which she so eloquently described, of living with cystic fibrosis.
Let me take this opportunity, as I like to do, to pay tribute to those who work in our NHS and their dedication, determination and commitment to provide a first-class care service to all patients, not least CF patients. I pay tribute to them for their efforts, all the time, on behalf of all of us and all our constituents.
Let me first speak more generally about organ transplants and the challenges of organ transplantation. In the UK, the need for an organ is greater than the number of donor organs available. About 8,000 people are on the national transplant list waiting for a transplant that will save their lives or significantly improve their quality of life. Unfortunately, too many people wait too long for a suitable organ to be donated. About 1,000 people a year die waiting—about three adults or children every day. That applies to organs in general. Many others lose their lives before they even get on the transplant list. As of 3 April this year, 75 people with cystic fibrosis were waiting for a lung transplant. About 50 cystic fibrosis patients receive a transplant each year, but unfortunately about 20 patients die each year on the transplant list. We can see the clear challenge to meet that need and assist those people.
This means that 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 based on the patient’s clinical need and the importance of achieving the closest possible match between donor and recipient. A number of factors are involved. The rules for allocating organs are drawn up by the medical profession in consultation with other health professionals, specialist solid organ advisory groups, and health administrations. Factors such as the blood group, tissue type, and age and size of the donor and the recipient are taken into account to direct the allocation of the organ and identify the best-matched patient or, alternatively, the transplant unit to which the organ is to be offered.
The Cystic Fibrosis Trust report “Hope for all”, published on 10 March this year, makes a number of recommendations focusing on three key aspects: increasing the number of organs donated for transplantation; making sure that we make best use of the donated organs; and making sure that patients are fully involved in decisions about their care. We continue to invest in the donation programme to optimise transplantation in the UK. In the five years between April 2008 and April 2013, donation rates rose by 50.3% and transplant rates rose by 30%. That is a record of good and significant progress in recent years. I pay tribute to NHSBT for the work it has done in this regard, alongside other health professionals and the charities. Encouragingly, donor and transplant rates continue to rise, and we see that pattern this year as well. However, we know we can do more to match the successful donation programmes in some other countries —as the hon. Lady said, there are other countries with better records—and to give more people the opportunity of a transplant.
As the hon. Lady and other hon. Members may know, a new seven-year UK-wide organ donation and transplantation strategy, “Taking Organ Transplantation to 2020”, was published in July last year. The strategy expressed the desire to make the UK system comparable with the best in the world. Within that, it aims for a rate of consent—the hon. Lady specifically talked about consent rates—of above 80%; it is currently 55%. Increasingly, consent is the most important strategic aim—interestingly, more so than donation. Spain achieved a consent rate of 84% in 2011—a remarkable achievement. We know that we have particular challenges in relation to consent rates in black, Asian and minority ethnic communities, which I have discussed at length with NHSBT and which hon. Members are aware of. I know of hon. Members not present here today who have done specific work in some of their local black and minority ethnic communities to raise awareness on this point. I would like to see us do more of that and use parliamentarians to do so.
Kerry McCarthy
It is perhaps remiss of me not to have mentioned in my speech the fact that in the past year Bristol has had its first Muslim lord mayor who, during his year as lord mayor, chose to focus on encouraging blood and organ donation from the BME communities. As his term of office is almost up, I ought to take this opportunity to congratulate Councillor Faruk Choudhury on that effort.
Jane Ellison
I join the hon. Lady in congratulating the lord mayor. That is exactly the sort of local leadership that can help. One of the big pluses of the devolution of public health to local government is that we see such leadership from people who know their community best and understand the diversity in their locality. I am keen to encourage that. Only recently we celebrated examples in other areas, where we saw that specific leadership in some communities where health outcomes were not as good as they could be. We are always looking for such opportunities, and I am delighted that the hon. Lady has taken the opportunity to highlight local leadership in that regard.
Our focus in the strategy is initially on increasing consent rates. We want people to support transplantation. We can all imagine that families are being asked to agree donation at probably one of the worst times in their life, but many families find that they get comfort from knowing they have helped others to live. We will keep a close eye on what happens in Wales following the changes there, to which the hon. Lady alluded. NHSBT also keeps international experience under careful review. I mentioned the good success rates in Spain, for example.
We need to make sure that we make the best use of the donated organs. Currently donor lungs are procured by a retrieval team and allocated to the transplant centre on a zonal basis, based on the location of the donor. The transplant team at the centre will decide whether or not to accept the lungs and will select the most appropriate recipient.
The trust’s report recommends the implementation of a national lung allocation system whereby donor lungs are given to the most urgent patients, regardless of where they live.
This is something that NHSBT’s cardiothoracic organs advisory group, which includes both lung clinicians and lay membership, will be considering very shortly, and in particular whether we should introduce a national lung allocation scheme for people who need a lung transplant urgently, with all remaining donor lungs continuing to be allocated on a zonal basis. The advisory group’s recommendations will then be considered by NHSBT’s transplant policy review committee, and if a change of allocation procedures is agreed, it will be implemented as soon as the governance arrangements can be put in place.
Kate Green
Will the Minister clarify whether the work that is going on now to review the allocation system is looking at the possibility of a national allocation system only for urgent cases, or whether it will also consider the advantages and disadvantages of a national allocation system in all cases?
Jane Ellison
I imagine that the advisory group is considering that, but I would rather check and get back to the hon. Lady after the debate. I should have thought that it was looking at the broader issue, but I will come back to her, if that is acceptable, and confirm that after the debate. It goes without saying that I will follow up this debate with NHSBT, which I am sure will be extremely interested to know that Parliament has an interest in the subject. We will revert to any hon. Member to whom I am not able to respond in detail.
The issues are complicated. I have only begun to get a sense of some of that complexity, partly in preparing for this evening’s debate. NHSBT will wish to be certain that any change of policy can be introduced in a fair and safe manner. We need also to ensure that people with cystic fibrosis receive the best quality of care for them and are involved in decisions about that. NHS England has published two CF service specifications, one for adults and one for children, recognising that, although similar, adults and children with CF have differing needs and it is important that the services provided should reflect that.
NICE has issued technology appraisal guidance recommending appropriate drug therapies—one of which has been mentioned by the hon. Member for Bristol East—in certain clinical circumstances, which NHS commissioners are required to fund where clinicians want to use them. The Government also fund a range of research on cystic fibrosis, in particular through the Medical Research Council and the National Institute for Health Research.
The hon. Member for Bristol East alluded to the need for research, so she may be interested to know that the MRC is funding a £3.3 million trial of repeated application of gene therapy for patients with cystic fibrosis. That is being undertaken by the UK Cystic Fibrosis Gene Therapy Consortium, which comprises world-leading teams at Imperial college London and the universities of Oxford and Edinburgh. The trial is testing whether gene therapy can improve the lung function of cystic fibrosis patients and its report is due to be published in May 2015. I am sure we will all await the review with interest. It has the potential for interesting and exciting breakthroughs.
I hope the hon. Lady will forgive me for responding to her points about benefits by saying that I will draw them to the attention of my colleagues at the Department for Work and Pensions. The issue is not in my remit, but her points have been noted and are on the record.
On prescription charges, I pay tribute to my hon. Friend the Member for Colchester (Sir Bob Russell), who has campaigned long and hard—but not successfully today—on the issue. I am afraid I do not have a response for him today, but I will get back to him after the debate.
I think I have covered most of the points that have been made. The hon. Lady raised specific points about local arrangements. Some interesting work is going on between the Royal United hospital in Bath and the Bristol adult cystic fibrosis centre at Bristol University hospital. They are looking at specialist commissioning and I think NHS England is looking to commission a model of adult CF care. I will look at the record after the debate and will draw that particular section of the hon. Lady’s speech to the attention of NHS England representatives, because some of the decisions about clinical care and commissioning sit with them. I will make sure they have a copy of the debate and I will ask them to respond directly to the hon. Lady on the issues within their remit.
In conclusion, I hope I have reassured the hon. Lady and other interested Members that we want to provide the best possible care for cystic fibrosis patients. Service specifications are in place to define that care and what great care looks like. We continue to do all we can to increase organ donation rates, with some notable recent success. We will look in particular at the issue of increasing consent rates so that we can give many more people the opportunity of a transplant. I have referred to the review, which is particularly germane to the current campaign, and I will ensure that interested Members are alerted to its outcome.
I will end by wishing colleagues, hon. Members, Madam Deputy Speaker and the staff of the House a pleasant Easter recess.
Question put and agreed to.