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Muscular Dystrophy

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 the hon. Member for Blaydon (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."