George Freeman responds to sickle cell debate

George Freeman responds to a Parliamentary debate on achieving a consistent high level of care for patients with sickle cell anaemia and thalassaemia across the UK.

The Parliamentary Under-Secretary of State for Business, Innovation and Skills (George Freeman): It is a great pleasure to serve under your chairmanship, Mr Owen, and to respond to the right hon. Member for Wolverhampton South East (Mr McFadden), whom I congratulate on securing the debate. I hugely welcome the opportunity to discuss this issue.

Sickle cell anaemia is a really terrible condition and diagnosis for all those who are affected, but especially for our African and Afro-Caribbean communities. I want to start by acknowledging the work that the right hon. Gentleman has done for his constituency and his community, and I join him in paying tribute to the all-party parliamentary group on sickle cell and thalassaemia, chaired by the hon. Member for Hackney North and Stoke Newington (Ms Abbott). I also pay tribute to the Sickle Cell Society, the Wolverhampton sickle cell care and social activity centre and the patient groups. As with so many rare diseases, it is the advocacy of the few that in the end leads to changes in mainstream provision, and I am serious about paying tribute to that. The right hon. Member for Wolverhampton South East made a number of important points that I will try to deal with in detail. If I run out of time, perhaps he would allow me to follow them up in more detail in writing.

I stress that for those who have had a sickle cell diagnosis, it is a life-changing moment. All of us who are involved in policy making should not take our eyes off the personal suffering that patients—those with the diagnosis—and families and loved ones experience. Some 250,000 people in the UK carry the sickle cell trait, with about 15,000 affected by sickle cell anaemia, as the right hon. Gentleman knows. For those affected, it can mean a life of constant pain management, including, often, extensive periods of hospitalisation when the pain is bad, blood transfusion and red cell therapy, and tiredness, dizziness, palpitations, jaundice and gallstones. All those in combination mean that people are denied the quality of life that the rest of us take for granted.

However, as the hon. Member for Strangford (Jim Shannon) pointed out, the worst aspect of all is a substantially reduced life expectancy. Even today, sickle cell sufferers will, on average, survive until their 40s or 50s. Even though that is a massive improvement on the position 40 years ago, when the average life expectancy was only 14 years of age, it is still a shock when the rest of us are expecting to live very much longer than that. We can only pay tribute to the bravery shown by the people who have to deal with all the problems that this condition brings. However, bravery and resilience are not enough; we need to look at the way in which we support and treat people and bring on innovative care pathways and medicines. That is why we are continuing to invest in improving services, especially blood, bone marrow and stem cell services, which are vital for the condition.

Let me say something about what we are doing. In England, NHS Blood and Transplant provides blood for transfusion services. There is targeted donor recruitment, extended donation testing, and supplements, through a national frozen blood bank suitable for the long-term storage of blood for those with rare conditions. NHSBT’s therapeutic apheresis services provide a range of services to patients through NHS trusts from its six units situated across England, in Bristol, Liverpool, Oxford, Sheffield, Manchester and Leeds. Those units undertake procedures that provide direct treatment to patients with a range of medical conditions, as well as collecting stem cells from both patients and donors. Therapeutic apheresis treatments and services provide both life-saving and life-enhancing treatments for patients referred in sickle cell crisis or for ongoing sickle cell management. NHSBT is working with commissioners further to improve access to automated red cell exchange for sickle cell patients as part of those services.

One option for patients is a stem cell transplant, which requires genetically matched stem cell units, either from bone marrow donated by an adult donor or through stem cells harvested from cord blood. In the past four years, the Government have provided an additional £12 million of new money to help with transplant services. The Department of Health, working in partnership with NHSBT and the Anthony Nolan charity, has overseen the delivery of improvements way above what we originally anticipated.

The achievements include the following. More than 60% of black, Asian and minority ethnic patients are able to find a well matched donor now, compared with 40% at the beginning of the Parliament, and 258 more UK patients received a potentially curative stem cell transplant in 2013-14 than in 2010-11. The process for stem cell provision has been significantly streamlined, with single access searching in both England and Wales. I am delighted to say that there are now 60,000 young donors on the so-called fit panel, whose volunteers are eight times more likely to have donated stem cells than other registry volunteers.

Increasing use of UK-sourced cord blood to meet the needs of UK patients is crucial. This year, more than 25% of cord blood transplants will use donations from UK donors, costing about half the price of imported units. That compares with 10% in 2010. The time taken to provide stem cells from adult donors has improved. The right hon. Member for Wolverhampton South East knows that that is a crucial issue. Samples for confirmatory HLA—human leukocyte antigen—typing are provided from more than 80% of donors within 15 days now, compared with 35% in 2010.

The NHS and its key delivery partners are committed to continuing service improvement—I will say more about that in a moment—in collaboration with patients and patient group representatives, which is crucial. In the NHS today, if a child is diagnosed with sickle cell anaemia, they will be referred to a care team in a specialist sickle cell centre. Those are specialist units usually based, as the right hon. Gentleman knows, in large hospitals and staffed by front-line health care professionals with a high level of expertise in treating people with sickle cell anaemia. A detailed treatment and care plan, which outlines future medical care, is now drawn up for each patient, and parents are given information and support to help them to manage their child’s condition.

Due to the complexity of sickle cell anaemia, multidisciplinary teams are now assembled. Typically, they include paediatricians, haematologists, clinical psychologists, social workers and specialist nurses. The purpose of the care plan is to avoid sickle cell crises and to provide adequate pain relief when a crisis does occur, as well as reducing the risk of serious complications developing, such as infections, stroke and other associated symptoms of sickle cell anaemia.

Clearly, we want to see improvements in health care services for all types of patients. The right hon. Gentleman made that point well. The Government have committed to specific strategic plans in key areas. One of those plans is “The UK Strategy for Rare Diseases”, which covers sickle cell anaemia. The strategy sets out a shared UK vision for all those affected by rare diseases. It is owned by each country in the UK and commits them to more than 50 commitments. The strategy focuses on five areas: empowering patients, identifying and preventing rare diseases, diagnosis and earlier intervention, the role of research and, most importantly of all, co-ordination of care. As I have said, people suffering from long-term conditions are resilient, but that resilience can easily be undermined by the constant to-ing and fro-ing that occurs when a patient’s care pathway is not properly managed.

Mr McFadde: I thank the Minister for outlining the nature of the specialist care teams that are in place. He is right, but the critical point made by the report from the peer review exercise was that although that approach worked well in some places, it did not work as well in others. The specialists whom he talked about—the specialist consultants and specialist nursing staff—were not always there in sufficient numbers, and there is still something of a lottery, some might say, or at least unacceptable variability in the quality of treatment and the understanding of the condition, depending on where the patient lives. I therefore want to press the Minister on the recommendations from the peer review exercise, which were all about making the best the norm. What will he and the Department do to ensure that those recommendations are followed through on in that way?

George Freeman: The right hon. Gentleman makes a good point. I have my eye on the clock, and I will deal with it.

I conclude my opening remarks by saying that it is no longer acceptable to make the patient fit the pathway. We need to fit the pathway around the nature and progression of the disease in patients. These patients in particular have to see a wide range of professionals, and we need to look at that model. The final thing that I want to mention in terms of our strategic response is the genome project. We are funding 100,000 full genome sequences, to be put together with phenotypic data, with cancer and rare diseases as the initial focus. I am confident that that will quickly start to unlock some insights into possible preventions and new treatments.

The right hon. Gentleman made a number of important points, and I want to acknowledge them. If I cannot deal with all of them now, I will come back to him in writing. He made points about the lack of understanding among GPs across the system; the need for better care pathways to try to reduce hospital admissions; the importance of data underpinning our understanding of good outcomes, best and worst practice and variability; and the important insights in the report. I want to come back to his two specific requests. I would be delighted to ask the various organisations involved to give me a progress report on where they have got to in implementing the various measures, and I will obviously share that with him; perhaps we will have an opportunity to debate it. I will also happily ask NHS England and the National Institute for Health and Care Excellence to look at the health economics of free prescriptions in terms of short-term costs unlocking longer-term savings. I cannot prejudge the outcome of that, but I will happily look into the issue.

In the three minutes left to me, I want to touch on a couple of the specific points that the right hon. Gentleman made. How do we promote understanding and get sickle cell disease higher up the agenda? The 100,000 genomes project also includes a substantial investment in training in rare diseases for clinicians across the NHS as we launch our genetic medicines service. NHSBT and the Anthony Nolan charity continue to promote donations of blood and stem cells, but there is also the issue of the training that goes with that. The Department of Health is working with those key delivery partners to see what more can be done to improve not only donation, but the understanding of the condition and the training across the system.

The right hon. Gentleman asked what measures were being put in place to support care for people with long-term conditions. Our aim is to make the NHS among the best in Europe at supporting people with long-term conditions such as sickle cell disease. In the past, we have not done as well in that area as we would have liked. Through the mandate, we have asked NHS England to make measurable, tangible progress and commitments to supporting people with ongoing health problems to live healthily and independently. The NHS outcomes framework contains a range of improvement areas, and I will happily ask it to give me a progress report on that work.

NHS England is tasked with responding to the UK rare diseases strategy. Earlier this year, as the right hon. Gentleman will be aware, it issued a statement of intent that sets out how it intends to play its part in delivering that strategy; and in the recent NHS England “Five Year Forward View”, it has set out various commitments on exploring specialist centres for rare diseases to improve the co-ordination of care for patients in line with the strategy. I understand that NHS England will be looking to those specialist providers to develop networks of services, integrating different organisations and services around patients. As I said, I will happily ask for a progress report and share it with the right hon. Gentleman. Possibly we will have a chance to debate that in a format similar to this.

I again pay tribute to the right hon. Gentleman’s leadership on this issue. I think that the advocacy of Members of Parliament and particularly those with high concentrations of patients who are especially heavily affected by this condition, along with that of patient groups and charities, will be seen in years to come to have played a major part in helping to drive new care pathways and the integration of research, medicine and care, so that patients who are suffering are given the support that they need.

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