Muscular Dystrophy
Westminster Hall debates, 3 November 2009, 1:30 pm
Caroline Spelman (Shadow Secretary of State for Communities and Local Government, Communities and Local Government; Meriden, Conservative)
I have called this debate to draw attention to the need for specialist, multidisciplinary care for everyone with muscular dystrophy and related neuromuscular conditions. Around 75 people in my constituency and more than 60,000 people in the UK are sufferers. I have a personal interest in the matter as a maiden aunt, with whom I grew up, suffered from a degenerative muscular condition, which left a great impression on me as a child.
I thank the Muscular Dystrophy Campaign for bringing the issues to my attention, and I record my gratitude to Mr. Anderson, who has put a huge amount of work into supporting sufferers of muscular dystrophy, and is chair of the all-party group on muscular dystrophy.
Let me set out the background. Muscular dystrophy covers many types of conditions involving complex and progressive multi-system disorders, including Duchenne muscular dystrophy, which afflicts young boys particularly, and of which there are estimated to be 100 cases in the United Kingdom, spinal muscular atrophy, myotonic dystrophy, limb girdle muscular dystrophy, facioscapulohumeral muscular dystrophy, myasthenia gravis, and more than 60 other related conditions.
Muscle diseases weaken and/or waste muscles, may affect the heart and lungs, and may cause lifelong disability and/or premature death. They may be inherited or acquired, and may affect people of all ages, backgrounds and nationalities. There are no cures, and without specialist multidisciplinary care most patients experience a further reduction in quality of life and, for some conditions, shortened life expectancy. Specialist multidisciplinary care is vital, as it improves quality of life and can dramatically extend life expectancy.
I was shocked to see data from the south-west showing that the mean age of death was 19 for patients with Duchenne muscular dystrophy. For similar patients in the north-east, the mean age of death was 30, and that age has since increased. That proves that it is possible for areas to make funding decisions that enable specialist care to be provided. That shocking statistic shows that we lag behind other European countries in the provision of specialist services, and it highlights the fact that in any civilised society such variances are unacceptable and are evidence of service failures that must be addressed with the utmost urgency.
I pay tribute to the parents of children who are diagnosed with muscular dystrophy and related conditions, and commend them on the way in which they have campaigned for improvements in their children's quality of life. I recently saw a moving short film produced by the Rosenfeld parents about their son—I believe that the Minister is aware of it—showing how hard it is for parents of children who are suffering from that type of muscular dystrophy to contemplate their child's life ending prematurely before their life is extinguished.
Neuromuscular specialist consultants need to be part of a multidisciplinary team with a specialist physiotherapist, a neuromuscular care adviser, and good links to respiratory clinicians, cardiologists, speech and language therapists, orthotists, rehab consultants, geneticists, orthopaedic surgeons, and occupational therapists.
I want to focus today on specialist care for sufferers in the west midlands, but I hope that the debate will go some way towards encouraging other regions to reconsider how their care services meet the needs of sufferers. I was recently invited to attend a meeting of the West Midlands Muscle Group in Cheswick Green in my constituency. There, I met Stuart Reid, who is in his late 20s and is affected by Duchenne muscular dystrophy. He is an eloquent speaker, given all the disabilities that he must overcome, and gave oral evidence to the all-party group's inquiry on national specialist care. I was shocked to learn from Stuart and others how the west midlands fares in comparison with other areas.
The west midlands is fortunate to have a number of dedicated and hard-working neuromuscular clinicians, including Dr. Ros Quinlivan, Dr. Helen Roper, Dr. John Winer and Dr. Nick Davies. It also has accomplished respiratory clinicians, such as Dr. Dev Banerjee and Dr. Martin Allen. However, the level of care in the west midlands is sub-optimal, compared with that in other regions. The service is overstretched, unco-ordinated, and reliant on charitable funding and the good will of the lead clinicians. Clinics are overbooked, and patients may have a long wait for follow-up appointments, despite only 50 per cent. of patients receiving specialist care.
Patients face massive problems in trying to access ongoing physiotherapy, hydrotherapy or psychological support. There are also issues with accessing speech and language therapy, and with funding for essential respiratory equipment. Some participants at the public meeting told me that they had to travel as far as Chester for specialist help.
Vitally, wheelchair services in the region are far worse than in many other parts of the country. Birmingham East and North primary care trust and South Birmingham primary care trust have admitted that children with muscular dystrophy must wait an average of 18 months, which is a long time in the life of a child suffering from such a condition, to receive a powered chair. That compares with a national average wait of 19 weeks. A wheelchair for a child with muscular dystrophy is far more than a mobility aid. In the short film that I watched about the Rosenfelds' son, Gavriel, it was clear that the wheelchair plays an important role in aiding breathing and supporting the spine.
Children and adults who are affected by these rare and progressive conditions are competing for equipment with patients with injuries such as leg fractures. Some children and adults with neuromuscular conditions are considered to have profound disabilities, and the assessment process requires greater knowledge and expertise than is often available in local wheelchair services. That may mean that people are not being properly assessed or offered appropriate equipment. There seems to be a process logjam in the provision of wheelchair services in the west midlands that goes wider than sufferers of muscular dystrophy. I hope that the Minister will help me to unscramble that logjam.
For the 5,000 people in the west midlands with a neuromuscular condition, there is only one care adviser. It has been suggested that care advisers are vital, because they reduce pressure on consultants' time by providing additional information and support in clinic, as well as advising patients about their overall well-being. Crucially, they recognise when a planned admission is needed, which reduces the cost and stress associated with unplanned admissions and emergencies. The south-west of England, which has a similar population, has five NHS-funded neuromuscular care advisers. I am an advocate of local primary care trusts being able to assess priorities in their regions, but that serves to show that the system in the west midlands could be better modelled.
Unplanned emergency admissions for neuromuscular patients are not only stressful and dangerous, but hugely costly. Work by the public health team at the West Midlands strategic health authority has shown that in the last financial year, my local Solihull care trust spent £271,746 on unplanned emergency admissions for local patients with muscular dystrophy and related neuromuscular conditions. Ours is a comparatively small PCT, with a population of 200,000, so that is a significant amount to spend on unplanned admissions. That is part of an overall £6.6 million spent in the region on unplanned emergency admissions for local patients with muscular dystrophy and related neuromuscular conditions.
The most costly emergency admissions are caused by respiratory crises, cardiac problems or falls. Although there will always be some emergency admissions for patients with such complex conditions, the figure can be greatly reduced. The Muscular Dystrophy Campaign has estimated that reducing it by only half would save PCTs more than £3 million. That is a very achievable target. One clinician in the region has had only a handful of emergency admissions in the past year out of a total of 850 patients. Clinicians' evidence suggests that people are 20 times more likely to have an unplanned emergency admission if they do not receive specialist care.
It seems to me that encouraging pooled budgets would mean better and more tailored care for patients. A single assessment process, incorporating both health needs and social care needs, would be a more effective way of administering treatment. In such a process, an individual and their carer would be given the flexibility and empowerment to choose their providers. They should be able to exercise that flexibility across the social and health care divide. Many patients do not realise that they are crossing a divide between two departments, but I think that we all agree that it is high time that the system was joined up, so that people do not find that there is a crack as they drop down between the two.
In January, the 17 PCTs that make up the west midlands specialised commissioning group will have to decide whether to accept the recommendations of the regional neuromuscular services development group to develop a co-ordinated, planned specialist service for all patients affected by muscular dystrophy and related neuromuscular conditions. I strongly endorse local health authorities being able to take decisions for themselves and not having top-down approaches forced on them, so I welcome the fact that regions such as the north-east are providing the services deemed so necessary to sufferers. I encourage the west midlands service providers to work together to ensure that muscular dystrophy sufferers have access to the essential specialist care that it has been shown can extend their life expectancy and improve their quality of life. We know that multidisciplinary specialist care has worked for sufferers in other areas of the country, and we desperately need it in the west midlands.
I dedicate the debate to my courageous young constituent, Stuart, who has outlived the mean life expectancy for his condition and demonstrated that he has the courage to drive himself forward, keep going and even write a novel and come to give evidence in Parliament when, as he put it—rather poignantly—to me, "I really shouldn't be here by now."
David Anderson (Blaydon, Labour)
It is a great pleasure to see you in the Chair, Mr. Sheridan. I congratulate Mrs. Spelman on her contribution to a debate that is taking place across the country. Yes, there are problems in the west midlands, but I would not want anyone to get the idea that the west midlands is alone in that. I am the chair of the all-party muscular dystrophy group, and in August, after some seven months of intensive inquiries, we produced a report that brought together professionals working at the highest level in neuromuscular care, people doing day-to-day basic care work with those suffering from these conditions, and, in particular, the families taking care of people with these diseases. The truth is that we need real improvements throughout the country.
I shall give one example. The hon. Lady spoke about Duchenne muscular dystrophy. One hundred young boys will die this year—two a week—as a direct result of that disease. Because care is sporadic across the country, some will die in their teens. Thankfully, some will not die until their late 20s. That is a direct result of the differences in care. In Denmark, however, they will die in their mid-40s, so we have a long way to go before we can say that we are doing what is best.
The term "postcode lottery" has been used, but that is not how things work. We are talking about a question of luck, history and geography. If a person happens to live in a part of the country where someone decided, many years ago, to specialise in neurosurgery, they might just have access to a team of people who happen to be linking up with another group of people who are developing work on, for example, sickle-cell disease and similar conditions.
That is not good enough. We need a strategic approach and we need the development, throughout the country, of specialised centres for everyone. Particularly in places such as the south-west, people are travelling ridiculously long distances to receive the treatment that they need. Indeed, the distance that they are travelling is making their condition worse. That is not the care that they should be receiving.
The all-party group is linking up with the specialised commissioning groups. This morning we had a meeting. We already have reports from 13, I think, of the groups on where they are in what they are trying to do. Some are positive, some are negative and some are neutral. We will not let go; we will continue campaigning with them to make the issue a priority. There is huge public support for the issue. We launched our report on
Ann Keen (Parliamentary Under-Secretary, Department of Health; Brentford & Isleworth, Labour)
I warmly congratulate Mrs. Spelman on securing this extremely important debate and, in particular, on the way in which she talked about her own family and, of course, Stuart, who is now very much in my mind. I know that public discussion is particularly important to families coping with the realities of muscular dystrophy, in that it raises awareness of the issues that they face. I am grateful to the hon. Lady for giving the House the opportunity to focus on the impact of muscular dystrophy on their lives.
The hon. Lady spoke eloquently about muscular dystrophy and the devastating effect that it can have on people living with the condition, their families and those who care for them. In fact, both she and my hon. Friend Mr. Anderson raised the issue of the ages to which people with muscular dystrophy live and the differences in those ages. I cannot add to the description given. I should like instead to concentrate on the main thrust of the hon. Lady's speech by responding to her concerns and those of the all-party group that the national health service is failing the thousands of people affected by this condition.
At this point, I pay tribute to my hon. Friend the Member for Blaydon, who is the chair of the all-party muscular dystrophy group, and to the other members of the group for their far-reaching inquiry into access to specialist neuromuscular care. I apologise for not being present at the meeting today: I was speaking at a conference this morning. That inquiry and its subsequent report have raised a number of important issues for my Department to reflect and act on. It highlights the shortcomings in existing services and makes it clear that we need to do more to improve services for people living with muscular dystrophy.
The Walton report, which is the report from the inquiry, is sadly only one of a series of hard-hitting reports to have highlighted the significant variations in standards of care that still exist for those living in some areas of England and Wales. It is totally unacceptable that people with muscular dystrophy are not being offered the full range of care and support that they need. From my many years of experience as a nurse and community nurse before I entered the House, I know the tremendous impact that conditions such as muscular dystrophy can have on patients and their families. I will not accept excuses that the problem lies with competing priorities or with the availability of resources.
I want to respond positively on that range of issues. Let me be clear: we want to ensure that people with this condition live as well as possible for as long as possible and that they do not just live with it—suffer it—but have a real life.
In 2005, the Government published the national service framework for long-term conditions, which is a 10-year plan that addresses the very issues highlighted in the report: the inequalities in access, the lack of integrated service provision, the work force shortages and the variable quality of care across the country. The NSF is based on the core NHS values of modernisation, breaking down professional boundaries and creating partnerships between agencies.
Achieving the standards set out in the NSF is clearly a huge challenge for some local providers, although others meet that challenge and tackle problems forcefully. There are no central targets or milestones, so it will be for people working at the front line, who best understand local needs, to decide local priorities, and it will be for commissioners to commission appropriate services.
Caroline Spelman (Shadow Secretary of State for Communities and Local Government, Communities and Local Government; Meriden, Conservative)
I am listening carefully to the Minister, but does she agree that the situation that she describes is precisely the problem? Muscular dystrophy does not have a target or a priority attached to it in this system of targets, so there is a danger that it will be given lower priority when providers and commissioners try to decide how to make use of resources.
Ann Keen (Parliamentary Under-Secretary, Department of Health; Brentford & Isleworth, Labour)
I am a fan of targets and I am pleased that the hon. Lady is, too. As I go on, perhaps I could offer suggestions on the issues that she raises.
As we approach the mid-point of the NSF's 10-year implementation period, it is fair to say that there is no comprehensive and detailed picture of the extent to which the NSF has been implemented or of the difference that it is making to the lives of people with neurological conditions. However, there are many examples of good, innovative practice, and the successful implementation of the NSF over the next five years will depend on our ability to identify and disseminate that good practice, although the NHS is not always good at looking at good practice and learning from it. We therefore need to identify the champions who can support the weaker services.
We have commissioned a mid-point review in 2010 to show what progress has been made towards implementation, to identify what works and why, and to lead to the adoption of good practice elsewhere. That will help us all to make better decisions in the design and delivery of services.
The all-party group and others see the development and implementation of clinical standards and guidance as a means to drive up quality and secure improvements. The National Institute for Health and Clinical Excellence is an independent body, which welcomes suggestions for future guidance from a wide range of sources, including health care and public health professionals, patients, carers and the general public. Health professionals are free to use their clinical judgment and any national and international best-practice guidance to develop appropriate health and social care services to meet the needs of those living with muscular dystrophy.
As the hon. Lady recognised, the new NHS is locally driven and looks outwards, not upwards. It is designed dramatically to improve the quality of care and the value that we get from our resources. Strengthening commissioning is, of course, at the heart of delivering that agenda, and that is where we have been concentrating our efforts to provide leadership on this crucial issue.
It is important that I commend the West Midlands strategic health authority and the West Midlands specialised commissioning group. In response to the Walton report, they are undertaking a review of muscular dystrophy and related neuromuscular services to produce proposals to allow PCTs to improve services. I say to the hon. Lady and my hon. Friend that I will now urge the regional specialist commissioners to liaise with the all-party group and I will ask the national team to co-ordinate. We are still learning about commissioning, and some people are more advanced than others.
The hon. Lady mentioned emergency admissions, and I am asking for a special study to look at the issue. As a former community practitioner, I believe that we will avoid emergency admissions if we invest in community care and a multidisciplinary team so that they can be as effective as possible. That requires us to have really positive champions and real clinical leadership.
David Anderson (Blaydon, Labour)
This morning, the all-party group heard evidence from a specialist working in the west midlands about the practical, day-to-day problems that arise when someone with one of these diseases goes into a normal emergency service because they have fallen over and broken their leg or because they have a headache, but they end up being kept in for much longer than they need to be because their disease is not recognised. The Minister mentioned resources, but by speaking to people on the ground we can see that money can be saved by giving people direct access to the specialist services that they need, and that money can be reinvested in looking after them properly.
Ann Keen (Parliamentary Under-Secretary, Department of Health; Brentford & Isleworth, Labour)
I absolutely agree with my hon. Friend, and the point was made clear to me when I had a meeting with young people and their relatives in my office some time ago. It is clear that we still have a lot of work to do on getting best practice out to all clinicians.
The group overseeing the review includes service users, carers, clinicians and the Muscular Dystrophy Campaign. I understand that their work will draw on a substantial amount of the best practice that the Muscular Dystrophy Campaign has already promoted in the west midlands. I can tell the hon. Lady that the moving film I saw in my office made it clear that access to wheelchairs is absolutely crucial. I have been informed that the review has also looked at wheelchair access and that it will recommend that wheelchair provision should be a specialised service. It will also recommend that there should be wider collaboration between PCTs on the issue of wheelchairs, and that wheelchairs should be included in the planning and commissioning of provision for those with neuromuscular conditions.
Access to a specialist multidisciplinary service is key and can, as the hon. Lady demonstrated, significantly increase life expectancy as a result of overall care monitoring and the maintenance of services. Again, the appropriate commissioning of services is vital. I have asked the national team, through the deputy director, Steve Collins, to work with the Muscular Dystrophy Campaign. On best practice commissioning, a workshop in the new year would be very helpful, and Steve Collins, who is with me today, is keen to have one.
Nationally, the long-term conditions delivery and support team has been supporting improvements to commissioning for the services that we are discussing. Earlier this year, the team delivered a number of regional "Levers for Change" events to spread understanding about the different mechanisms that can be used to promote implementation of the national service framework and, where appropriate, of NICE guidance.
Long-term neurological conditions, and particularly the NSF's quality requirements, will be referenced in a commissioning guide, which is under development as part of the wider long-term conditions agenda. I have to stress again, however, that one reason for the variations in local services is the lack of clinical leadership on this issue. We are working alongside those involved with long-term conditions to pull together all our regional clinical champions, who will work with local NHS organisations.
I am conscious of the time, so I want to tell the hon. Lady and my hon. Friend of the Prime Minister's commission on the future of nursing and midwifery. I am pleased that my profession of nursing is always at the forefront when carers and users want specialist nurses. Specialist nurses can have the time and commitment to give families, and that is one of the key issues that the commission is looking at.
People with muscular dystrophy and their families are concerned about access to new drugs and treatments, and it is absolutely understandable that they want potential treatments to become available as soon as possible. We need to ensure that the quality, safety and efficiency of any potential treatment are not in doubt. We are a world leader in health research, and I congratulate our scientists, who have done so much for those with this disease.
I cannot conclude without acknowledging and thanking the all-party group for the Walton report. I must also tell Stuart, whose story has touched me today, that we will do our very best and that we will continue to work to bring about improvements for people living with muscular dystrophy.
Question put and agreed to.
Sitting adjourned.