Cystic Fibrosis

Kate Green Excerpts

Thursday 10th April 2014 Commons Chamber

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

I am grateful to my hon. Friend for raising the issue of allocation of lungs for transplant. In the north-west of England we have poor levels of transplant. People wait longer and are more likely to die on the waiting list. Does she agree that it is important that the Minister presses for the modelling, which I understand is being carried out, on the impact of a national allocation scheme to be given great attention and accelerated if possible, so that we can have the evidence on the benefits of such a scheme in this country as quickly as possible?

[Kerry McCarthy]

I agree entirely with my hon. Friend. As I have said, it makes such a difference if more people come forward as donors, not just for lung transplants but for many other types of donation as well, from blood through to other organs. I urge the Minister to give this the utmost priority, because, as we have said, it can make such a difference to people’s lives.

The Department of Health has advised that the most recent analysis showed no significant difference in allocation across UK lung transplant centres. But the Cystic Fibrosis Trust clearly believes that an improved allocation system could address the shocking fact that one in three cystic fibrosis patients die before they get to the top of the waiting list. So I ask the Minister to review this with NHSBT, and consider the evidence from the Cystic Fibrosis Trust. It would also be helpful if she could provide more information on the current review by the cardiothoracic organs advisory group, and say whether it is considering a national allocation system, as referred to by my hon. Friend, or consulting stakeholders such as the Cystic Fibrosis Trust and specialist centres, and when it is likely to report.

The “Hope for more” report also highlights that 62% of survey respondents reported that psychosocial support during the whole transplant process is insufficient, and concludes:

“The demand for services that assist the family and individuals in coping with cystic fibrosis is drastically underestimated”.

In response to a parliamentary question that I tabled, the Minister explained that decisions on psychosocial support are a matter for clinicians and commissioners, but I would urge further consideration of the report’s findings and how the Department of Health can help to improve provision and ensure that clinicians have the resources that they need, working with commissioners to address gaps in information, support and psychosocial services for patients waiting for a transplant and post-operative.

It is clear that the specialist centres, working with the Cystic Fibrosis Trust, are making an incalculable difference to their patients’ lives. The trust is putting real money into the provision of services for cystic fibrosis patients. In 2012-13, the trust contributed more than £1.6 million to research projects, and more than £1.1 million to clinical care. It also provides a helpline that takes more than 3,000 calls every year, and it is able to provide limited welfare grants to people with cystic fibrosis and their families who are, understandably, struggling with the impact the condition can have on their lives.

I congratulate the Cystic Fibrosis Trust on its work and all those people that I met at the cystic fibrosis centre in Bristol, who were so dedicated and keen to get across to me the fact that with more resources they would be able to do an even better job in coping with the increased number of patients. I hope that the Minister takes that on board.

--- Later in debate ---

[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.