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Neuromuscular Care (North-West)

Volume 523: debated on Wednesday 9 February 2011

Motion made, and Question proposed, That the sitting be now adjourned.—(Paul Burstow.)

I thank Mr Speaker for allocating time for this important subject. I pay tribute to the excellent Muscular Dystrophy Campaign, which does such brilliant work in this field and has assisted me in preparing for the debate. This morning, I will bring to the attention of the Minister the significant gaps in specialist neuromuscular care services in the north-west region that many people living with muscular dystrophy and related neuromuscular conditions currently experience. Vital review work undertaken by the NHS North West specialised commissioning group in the past six months is encouraging, but families need to see it translated into real improvements to services. It also provides an opportunity to improve patient outcomes and to reduce the amount of money spent on unplanned emergency admissions to hospital for people in the north-west with neuromuscular conditions.

Let me briefly outline my personal connection to muscular dystrophy. I am 47 years old, and I had a cousin, Stephen Payne, who, if he was still alive today, would be of the same age. He was diagnosed with Duchenne muscular dystrophy at the age of six, and I remember the devastating effects that it had on our family. This was in the late 1960s, when not a lot was known about the condition. I remember my uncle, Mr Barrie Payne, taking his son to Harley street for a diagnosis. I am afraid to say that it was not good. None the less, Mr Barrie Payne is a fighter and a campaigner and he threw all his energies into fundraising to see if a cure could be found for Duchenne.

My very earliest memories, therefore, are of a family fighting and campaigning for a cure for that dreadful disease. I also have very early memories of politicians getting involved in this vital subject. I pay tribute to Lord Alf Morris of Manchester, who, at the time, was the MP for Wythenshawe. Coincidentally, Lord Morris’s sister lived on my council estate, and I remember him driving to our estate in his Wolseley car. At the time, those cars were for very special people. He came to see my family when he visited his sister and I remember thinking at the time what a special man he was. In those days, in the ’60s and ’70s, it was thought that politicians could help ordinary people from working-class backgrounds such as mine. I remember so well the work that my family and Mr Morris did to get a change in legislation. I am pleased to say that Alf Morris was behind the Chronically Sick and Disabled Persons Act 1970, which was the first Act in the world to give rights to people with disabilities.

I did my best to raise money for the muscular dystrophy charity. I used to sell pens, pencils, rulers and pencil cases in my school yard at primary school. Imagine a head teacher allowing a child to go into school with a bag full of goods to sell for cash in these politically correct times. Coincidentally, my head teacher lived next door to my cousin, Stephen Payne, and at school fairs he used every opportunity to raise money for muscular dystrophy.

My uncle continued to campaign to raise money and awareness. People in wheelchairs were often not allowed access to places such as airports and museums, which led to considerable arguments. My uncle rightly felt that people with disabilities should be allowed in. I am glad to say that in the 21st century, things are a lot different.

Stephen was a bright and articulate individual, and he was always forthright in his opinions. He was a Manchester City fan, while I was a Manchester United fan. When Manchester United got relegated in 1973, he certainly let it be known how pleased he was about that. Stephen died in California when he was 21. His peers died when they were in their very early teens, which just goes to show that palliative care and hydrotherapy can extend the lives of people with Duchenne.

The Muscular Dystrophy Campaign is the leading UK charity and focuses on all neuromuscular conditions. It is dedicated to improving the lives of all people with such conditions. Founded in 1959, the Muscular Dystrophy Campaign funds vital research, provides and supports care services and gives information, advice and direct help to individuals living with neuromuscular conditions. I am honoured to be a member of the all-party parliamentary group for muscular dystrophy, which has highlighted shocking gaps in service across the UK and continues to call for improvements in access to specialist neuromuscular care to follow up recommendations in the Walton report.

There are more than 60 types of muscular dystrophy and related neuromuscular conditions. It is estimated that more than 1,000 children and adults in every million of the population are affected by muscle-wasting neuromuscular diseases—in the north-west around 8,000 people in total. Such disorders can be genetic or acquired. A number of conditions, such as Duchenne muscular dystrophy, are particularly aggressive. They cause progressive muscle wasting, weakness, orthopaedic deformity and cardiac and respiratory compromise, and result in premature death. Many young boys in the UK with Duchenne muscular dystrophy are dying before they get beyond their teens; that is unacceptable.

Specialist multidisciplinary care has been developed by leading clinicians as the best model for delivering effective care for such complex multi-system diseases. The provision of expert orthopaedics and early cardiac monitoring and intervention has been shown to improve muscle function and maintain independent mobility. People with neuromuscular conditions, therefore, need specialist multidisciplinary care, support and intervention from a range of professionals and specialists. That was recognised as part of the specialised services national definitions set. Leading neuromuscular clinicians fought hard to get those services recognised as specialist by the Department of Health.

Specialised services are defined in law as services with a planning population of more than 1 million people, which means that a specialised service is not provided by every hospital in England. The SSNDS describes the services in more detail. The definitions provide a helpful basis for service reviews and strategic planning, which enables commissioners to make comparisons of activity levels and spend. They help with the identification of activity that should be regarded as specialised and therefore subject to collaborative commissioning arrangements. The 10 specialised commissioning groups, acting on behalf of the members of primary care trusts, are responsible for the commissioning arrangements for specialised services.

Neuromuscular conditions come under the auspices of a number of specialities; they are genetic conditions, so geneticists sometimes deal with patients. The conditions sometimes affect children, so paediatricians are involved. A number of the adult forms come under the heading of neurology. Some of the conditions require respiratory care, which is provided by a respiratory practitioner, and some are metabolic conditions such as Pompe, and patients are treated by specialists for metabolic disorders. Therefore, health care for people is quite fragmented, and that clouds professional responsibility. “Neuromuscular” must be recognised as a speciality along with neurology.

Dr Ros Quinlivan, a leading consultant in paediatrics and neuromuscular disorders, has outlined the effects of neuromuscular conditions and how they need to be managed:

“Neuromuscular conditions are rare and include: Muscular dystrophies, metabolic myopathies, congenital myopathies, inflammatory myopathies, Spinal Muscular Atrophies. Many of these conditions affect only skeletal muscle and thus cannot be considered to be neurological disorders, in fact skeletal muscle can be considered to be the largest organ in the body. Most neuromuscular disorders are genetic in origin and affect families, but the inflammatory myopathies are acquired and require specific treatment. Affected patients range from newborn infants to elderly people. The effect of many of these conditions is on the skeleton causing skeletal deformities due to muscle contractures and on the heart and lungs causing respiratory or cardiac failure which can significantly limit life expectancy.

The physical management of these disorders is quite distinct compared with conditions affecting either the nervous system or the musculo-skeletal system (bone and joints). Proximal and axial muscle weakness caused specific functional difficulties not seen in patients attending clinics in other specialist areas. The progressive nature of these conditions means that a multi-disciplinary approach to care, with experienced clinicians specialising in neuromuscular disorders, is essential to achieve the best outcomes.”

It is now felt by the clinical community that it is time to make a neuromuscular curriculum part of the medical career, to establish the neuromuscular field in its own right. The conditions have a lot in common, so it makes sense that they are treated by the same person. For example, some forms of limb-girdle muscular dystrophy exhibit similar symptoms to some forms of spinal muscular atrophy, but one is a muscle disease and the other more a neurological disease. They are long-term rare conditions, which makes them quite different from neurological diseases such as Alzheimer’s and Parkinson’s.

Neuromuscular services need to be commissioned on a regional basis. Currently they are commissioned by the 10 regional NHS specialised commissioning groups, with top-slicing of PCTs. That method of commissioning services for these rare and very rare conditions has been endorsed by a new body of experts, the British Myology Society. It makes no sense for one PCT to commission specialised services. Unlike conditions such as Parkinson’s or multiple sclerosis, there are no guidelines from the National Institute for Health and Clinical Excellence for these neuromuscular conditions, which presents real difficulties when trying to set standards of care across the country.

That situation has been a contributing factor to the postcode lottery that has arisen, and which was highlighted in the all-party group on muscular dystrophy’s Walton report, published in August 2009. That followed reports by the Muscular Dystrophy Campaign, as part of the charity’s “Building on the Foundations” campaign, which revealed the shocking lack of specialist care in many parts of the country. The lack of knowledge, training and skills in the sector is a significant concern. For example, there is no specific training or curriculum for neuromuscular services in the neurological field.

I am sure that hon. Members will share my concerns and the frustrations of people living with neuromuscular conditions in the north-west, as expressed in the Muscular Dystrophy Campaign’s patient survey in 2010. Deborah Hurst from Liverpool is affected by facioscapulohumeral—FSH—muscular dystrophy. However, she was not diagnosed with it until she was in her late thirties. She is now 47. Her two daughters were born before she was correctly diagnosed and one of them, who is now aged 25, has inherited the condition. Deborah says:

“I have two daughters and I knew one was affected, but the doctor told me I was fussing and silly. When I finally got them tested, he congratulated me on my actions, which I was very mad about as my daughter took her diagnosis very badly at the time and ‘congratulations’ was not what we wanted to hear.”

Mrs H from Lancashire has a son affected by a neuromuscular condition. She says that in her experience, GPs do not understand such conditions:

“My GP is very good but says, ‘We have about two hours of tutorial on muscular dystrophy in the whole medical training.’ So therefore they have no in-depth knowledge.”

Elaine Sands from Stockport is also affected by FSH muscular dystrophy. She does not receive any specialist care, but she would value the support of a neuromuscular care adviser. She says:

“As I am housebound, it would be nice to have someone give me physiotherapy and also some kind of visitor who knows about my condition, as I live alone and I would appreciate being able to talk to someone who understands the disease.”

However, the situation is different for Joanne Ashton. She has a five-year-old son, Liam, who has Duchenne muscular dystrophy. Through the specialist neuromuscular service at Alder Hey hospital, Joanne and her family have access to a specialist consultant, Dr Stefan Spinty, and to a full multidisciplinary service, including a neuromuscular care adviser. Joanne says:

“Shirley, our Care advisor, is fantastic. We only have to ask and she’s there. Liam had his wish granted, through the “Make A Wish Foundation”, because he was nominated by Shirley. So we are all impressed with the care advisors.”

The Muscular Dystrophy Campaign’s clinician-led report, “Building on the Foundations in the North West”, which was published in June 2009, made a number of findings about neuromuscular services in the north-west.

I thank the hon. Gentleman for giving way and I congratulate him on securing this debate. He has rightly referred to the issue of care advisers. Obviously I understand that the north-west of England is his particular concern, but does he agree that if more emphasis were put on having excellent care advisers right across the UK, like the adviser who he has just referred to, that would help those who suffer from this condition immensely in trying to come to terms with it?

I thank the hon. Gentleman for that intervention. I wholeheartedly agree. When someone is suffering from a condition, there is nothing quite like having people trying to help who understand what they are going through, both physically and mentally. So I wholeheartedly agree.

As I was saying, the “Building on the Foundations in the North West” report found that three out of four neuromuscular patients and their families have no access to a key worker or a care co-ordinator. About 6.5 regional care advisers are needed to serve the estimated 8,000 people —which is up from an earlier estimate of 6,500 people—in the north-west area who have a neuromuscular condition. Many of those people are simply not known to providers of health services.

The report also found that neuromuscular patients have very limited access to treatment, in particular to ongoing physiotherapy. Specialist physiotherapists are required to support outreach clinics and to provide training and professional development for community physiotherapists. In the north-west, two fifths of neuromuscular patients said that they do not receive enough physiotherapy.

Another finding of the report was that there is no dedicated physiological service for neuromuscular patients, despite the importance of such a service as part of multidisciplinary care for that patient group, who have rare and very progressive conditions. Those conditions are often genetic, there are no known cures and there are only limited treatments available. Greater support at the transition from paediatric services to adult services is needed, given the evidence that services are removed or greatly reduced when patients leave paediatric services, even though their needs may well increase given the progressive nature of many of these conditions.

I thank the hon. Gentleman for giving way and I congratulate him on raising an important subject. In fact, he highlights a very significant problem. If I understand him correctly, he is saying that we need an adequate clinical network for the rare disease that he is speaking about and a range of providers need to be joined seamlessly, as it were, in some way for the good of the patient. Normally, we expect the strategic health authority to identify the failures to provide such a seamless service and to somehow levy the PCTs to deliver it, which the patients expect and deserve. Is he saying that the central problem is how such a service will progress under the new arrangements, when PCTs, SHAs and other such organisations, which are mandated to resolve these problems, no longer exist?

I thank my hon. Friend for that intervention. He makes a very good point. The new arrangements are a threat, but they are also an opportunity, because services are currently provided by the PCTs but not all of them understand these neuromuscular conditions. The new arrangements are a real opportunity for the Muscular Dystrophy Campaign to get its point across, so that we get off on the right foot when the changes come in. However the GP-led consortia really need to understand and appreciate what is required. It is about having a holistic approach. Shortly I will discuss an excellent neuromuscular centre in Cheshire, which makes a huge difference to patients. It encompasses physiotherapy and the other aspects of care that make life so much more comfortable for those people who have muscular dystrophy.

I apologise to the hon. Gentleman and to you, Mr Davies, because I will not be able to stay for the duration of the debate. Consequently, I will not find the answer to the problem that I have just referred to.

I apologise to my hon. Friend for intervening immediately after another intervention. He has just raised an interesting point about the transition from paediatric services to adult services. In my own area of the south-central region, which is clearly outside the geographical area that is the focus of this debate, we have recently managed to secure at least an advertisement for a new care adviser in the area. However, I understand that that care adviser will not be able to advise on paediatric conditions but only on transition and adult services. Is it not the case that we need a full range of services for all sufferers of this disease and a proper range of advice across all ages?

My hon. Friend makes a very good point and I totally agree. A holistic approach is needed and there should be a seamless transition from being a young person and receiving paediatric services to receiving adult services. However, this point does not just apply to muscular dystrophy. For example, lots of mental health care services suffer from similar problems. Nevertheless, my hon. Friend is quite right. There should be a seamless transition from one service to another.

Greater support at transition from paediatric to adult services is necessary to provide evidence of services being removed or greatly reduced when patients leave paediatric services, even though, as I have said, their needs may well increase given the progressive nature of many of these neuromuscular conditions. There is a three-monthly transitional clinic in Manchester and a monthly transitional clinic that alternates between Alder Hey children’s hospital and the Walton centre, which are both in Liverpool. Both those services—in Manchester and Liverpool—are extremely vulnerable and entirely dependent on the availability of their respective consultants. A transitional clinic at Preston is evolving, but it is not formally funded and is based on the good will of the clinicians. The transitional clinic at Alder Hey children’s hospital is the only one that is attended by the required multidisciplinary team. None of the transitional services in the region is funded or appropriately staffed.

The Walton report, published in August 2009, expressed the concerns that the all-party group on muscular dystrophy developed as a result of its inquiry into access to specialist neuromuscular care. Martyn Blenkharn, chair of the Muscular Dystrophy Campaign’s North West Muscle Group, expressed in written evidence to the all-party group his frustrations about attempts to access NHS physiotherapy:

“No hydrotherapy available in the area - private arrangements can be made, but no assistance from NHS physiotherapists can be obtained. Compared with the previous PCT area (North Cumbria) which covered the area where I used to live, the service in my current PCT area (North Lancashire) is totally unsatisfactory - the quality of care from those who treat me directly is fantastic, but their hands are tied to provide what is really needed.”

The all-party group concluded in its regional summary about the NHS North West region:

“We heard from clinicians in the North West region about the problems facing the multi-disciplinary North West Neuromuscular Network - founded and chaired by Dr Stefan Spinty, Consultant Paediatric Neurologist and lead neuromuscular clinician at Alder Hey Children’s Hospital, Liverpool. Dr Spinty is currently managing this vital network single-handedly without any funding. We believe that the Network should at least be supported by a Network Coordinator. Greater support at transition from paediatric to adult services is also needed, given the evidence of services being removed or greatly reduced when people leave paediatric services. Existing transition services are extremely vulnerable and we were concerned to learn from clinicians that none of the transitional services in the region are funded nor appropriately staffed. Having met with commissioners from the North West Specialised Commissioning Group to discuss these concerns, local clinicians and representatives from the Muscular Dystrophy Campaign were disappointed to be told that there are competing priorities in the region, and that PCT budgets were under strain. We urge the North West SCG and the local PCTs to undertake a service review to address the weaknesses highlighted by clinicians, patients and the Muscular Dystrophy Campaign.”

The NHS North West specialised commissioning group has taken significant steps forward since those findings, and I will outline them shortly.

The North West Muscle Group raises awareness of neuromuscular conditions and provides a forum for people living with the condition to share experiences and advice about access to local and regional services. Since its launch in June 2009, the group has been actively campaigning to improve access to neuromuscular services in the region, engaging with MPs and with the NHS North West specialised commissioning group. Pressure from the North West Muscle Group, alongside the Muscular Dystrophy Campaign and the all-party group, was instrumental in ensuring that the NHS North West specialised commissioning group conducted a thorough review of neuromuscular services.

Joanne Ashton, a member of the North West Muscle Group, commented:

“I’m glad I joined the Muscle Group. It means I’ve got all this information early on and I won’t come up against a brick wall later - I feel I’ve been pre-armed. It’s nice to know I’m not on my own and it’s good to meet other people at different stages. Every day I imagine how bad things could get, but at the Muscle Group I met young lads with Duchenne muscular dystrophy who are in wheelchairs and they’re fantastic, they’re doing so well. Everything had a real positive spin on it too, and I realised that it’s not all doom and gloom.”

The campaign in the north-west was further spurred on by a comment made by Mike Farrar, NHS North West’s chief executive, to Lord Walton of Detchant at an event in Parliament in November 2009. Having referred to the review of neuromuscular services in the south-west, which Sir Ian Carruthers, NHS South West’s chief executive pushed through, Mike Farrar commented:

“Anything Sir Ian Carruthers can do, we can do better”.

As a result of lobbying by the Muscular Dystrophy Campaign, a review of services was set up in the NHS South West specialised commissioning group in February 2008. In February 2009, local primary care trusts approved a new £1 million neuromuscular strategy to reduce the £6.9 million spent in the region on unplanned emergency admissions to hospital for people with neuromuscular conditions.

I am fully aware, as are several hon. Friends, of the excellent work by the NeuroMuscular Centre in Winsford, Cheshire, which is in the constituency of my hon. Friend the Member for Eddisbury (Mr O'Brien). That centre provides ongoing specialist physiotherapy, which reduces the number of falls among people with neuromuscular conditions, and it also offers social enterprise opportunities. However, although the physiotherapy provision is regarded as excellent by those who go to the centre, difficulties are encountered with PCTs and funding, as reported in the Muscular Dystrophy Campaign’s patient survey 2010. Mr A from Cheshire has Charcot-Marie-Tooth disease and travels to the centre for specialist physiotherapy and hydrotherapy, but his local PCT is unwilling to pay, despite not offering him any alternative physiotherapy or hydrotherapy provision. Following concerted pressure by the Muscular Dystrophy Campaign, the North West Muscle Group and the all-party group, Jon Develing, chief officer of the NHS North West specialised commissioning team, made a personal commitment to the all-party group in January to recommend that the NHS North West specialised commissioning group undertake a review of neuromuscular services.

The review was set up by the commissioning group in May 2010, and the steering group set up an effective model for the NHS working with the Muscular Dystrophy Campaign, patients and expert clinicians from the region. To further involve people living with neuromuscular conditions, a stakeholder day was held in September 2010, which represented a vital opportunity for people to have their say about the services that are crucial for an acceptable standard of specialist neuromuscular care in the region. That led to a gap analysis and a report with recommendations for service improvements— the first time ever that neuromuscular services have been looked at in this way, across the whole region.

The recommendations are currently being put to local primary care trusts to approve new investment for a neuromuscular strategy. The proposed minimal required investment to reduce the £13.6 million spent on unplanned emergency admissions to hospital for neuromuscular conditions and to sustain neuromuscular services across the north-west includes 2.5 new fully NHS-funded care advisers, 2.5 specialist consultants, two to three specialist physiotherapists and one specialist neuromuscular nurse.

Will the Minister agree to write to the specialised commissioning group and to PCTs, endorsing the recommendations as necessary steps to save money and reduce unplanned emergency admissions? Will he ensure that a named individual in the NHS in the north-west will take the work forward once the specialised commissioning groups disappear? The neuromuscular network approach is hugely important to ensure the co-ordination of neuromuscular services in specialist multidisciplinary teams, as demonstrated in the south-west of England and by the Scottish Muscle Network, and to ensure links to the primary and secondary care that plays a crucial part in the management of neuromuscular conditions.

Dr Stefan Spinty, consultant paediatric neurologist at Alder Hey children’s hospital, who played a leading role in the north-west neuromuscular service review, said:

“In order to improve patient outcomes and help to reduce unnecessary and costly hospital admissions, it is important that the recommendations from the North West Specialised Commissioning Group report, which is due to be published soon, are implemented. All neuromuscular clinicians who have been involved in the North West neuromuscular service review are committed to support the implementation process to further improve and secure service provision for individuals affected by neuromuscular conditions in the future.”

Christine Ogden, a campaigner and fundraiser from Bolton, whose grandson has Duchenne muscular dystrophy, said:

“It is vital, that essential increase in care, support and advice for families outlined in the North West Specialised Commissioning Group’s report recommendations, which will make a real difference for families living with muscle disease. It is also so important that information for health professionals about neuromuscular conditions is significantly developed.”

Beryl Swords from Liverpool, whose son John has FSH muscular dystrophy, has commented on the provision of physiotherapy for adults with neuromuscular conditions:

“I feel strongly that physiotherapy for adults with muscular dystrophy is totally inadequate. If improvements were made to North West neuromuscular services, then perhaps this area of care could be more freely available, keeping people with the condition mobile for longer.”

The urgency of improving neuromuscular services in the north-west is encapsulated in the following comments by Nicci Geraghty, a north-west campaigner and fundraiser:

“I have two nephews with Duchenne muscular dystrophy. This is not only a cruel condition for my nephews to suffer from, but also very harrowing at times for us as a family to watch each stage of progression knowing that the postcode lottery already exists throughout the country. This has a huge impact on survival rates and I don’t wish to see my nephews robbed of any chance they have to lead the best quality of life possible.”

The evidence provided makes a compelling case for the urgent necessity of developing and improving neuromuscular services in the north-west in order to save money. Will the Minister write to NICE stressing the importance of a NICE quality standard for Duchenne muscular dystrophy, as well as one on home ventilation and respiratory support? Will he attend the next meeting of the all-party group on muscular dystrophy on Wednesday 9 March to update the group on progress, and will he agree to meet clinicians who have been developing a neuromuscular curriculum with the Association of British Neurologists? Thank you for calling me, Mr Davies.

It is a pleasure to serve under your chairmanship, Mr Davies. I congratulate the hon. Member for Weaver Vale (Graham Evans) on securing this debate, which is important to many people. Although the title of the debate refers to neuromuscular services in the north-west, my constituency neighbour the hon. Member for East Londonderry (Mr Campbell) and I come from the north-west of a different island. This is not revenge for the map-reading errors that many of us would have heard excuses for over the years in border areas in Northern Ireland, nor is it an attempt to hijack this debate. I want to give positive support to the articulate efforts of the hon. Member for Weaver Vale, who spoke compellingly about what muscular dystrophy can mean for the individuals affected and their families.

Unlike the hon. Gentleman, I do not have a relative who suffers from muscular dystrophy, but I remember being particularly impressed by a young constituent of mine and his family. My constituent, who unfortunately died a couple of years ago, was named Donovan McKeever. When his parents, Brendan and Teresa, heard Donovan’s diagnosis, they were confounded by the degree to which nobody knew what to say to them or what they were talking about, asking about or looking for. Donovan’s father Brendan wrote a small book about his experience, titled “It Shouldn’t Have to Be Like This”.

Unfortunately, when a child is diagnosed with muscular dystrophy—this also happens with many other conditions, such as autism—parents often have to navigate systems and negotiate between services as though they were the first to find themselves in that situation. The hon. Gentleman’s speech reflected such frustrations. Because people know the good work of the Muscular Dystrophy Campaign and know that it is a recognised disease, they assume that care services are in place and that the system kicks in and knows what to do, how to pass people on and how to connect services. They assume that key workers exist to ensure that needs are met, whether that involves a disabled facilities grant for adapting housing, or assistance deciding which school environment will be most conducive or accessible. Families need support, and they expect the system to provide it. For people with muscular dystrophy—Donovan had Duchenne muscular dystrophy—that does not always happen.

The hon. Gentleman mentioned the importance of care advisers, as did the hon. Member for East Londonderry in his intervention. Northern Ireland has a muscular dystrophy care adviser, but unfortunately the funding for that care adviser is committed only until the end of March, and no long-term funding is in place. Not only are things not as they should be, but the existing service and the commitments that have been made may well disappear in the context of budget squeezes and other changes.

We should use this occasion to call for better services, planning and support, not just in the interest of individuals with such conditions and their families but in the interest of providing well-managed public services and savings. The hon. Member for Weaver Vale mentioned unplanned emergency admissions. Some 2,000 people in Northern Ireland suffer from muscular disease, and their unplanned emergency admissions cost at least £2.25 million a year. Better and more appropriate and available services would lead to savings. Making people present themselves in a less appropriate context puts pressure on other services and adds to costs, which is not efficient. Cutting corners in such areas in the name of efficiency savings is wrong, and some of the cuts and squeezes taking place are counter-efficient.

I know that the Minister is particularly concerned about the health services that the hon. Gentleman and I have mentioned. The issues on which patients need to engage the public policy system are not confined to clinical presentations. In the context of some other changes that the Government are introducing, such as changes to disability living allowance and medical assessments, I would hope that the Minister acts as an advocate for patients with muscular dystrophy to ensure that they are not overburdened by medical assessments. They find it difficult enough to navigate the system and get the services that they expect; it should not be made harder for them to get support such as disability living allowance and the mobility component.

On the intended removal of the mobility component of DLA from people in residential care, many young adults with muscular dystrophy choose to live in a residential care setting because of their situation. Their parents may have passed on, and other family members may have moved on. It is nonsense for people who have made that choice to lose the mobility component, with all the social support, access, personal outlets and socialising that it allows. I hope that this debate is not purely about the important issue of clinical and medical services for those with muscular dystrophy; I hope that we will take a holistic approach to people’s particular needs.

The hon. Member for Weaver Vale mentioned specialist multidisciplinary care. If we break the issue down to our different locations, whether we are talking about the new single commissioner for Northern Ireland, the Health and Social Care Board—

Order. I do not wish to interrupt the hon. Gentleman’s flow, but I hope that he appreciates that the terms of the debate relate specifically to the north-west. Although his comments on Northern Ireland are interesting, I hope that he will tie them in to the situation in the north-west, as that is the title of the debate.

I fully accept your admonition, Mr Davies. I made that point at the start.

If we consider specialist multidisciplinary care in relation only to different localities—whether primary care trusts and GP-led commissioning in the north-west of England or purely within the devolved regions of Scotland or Northern Ireland—we might miss a point. In the case of rarer diseases and conditions, a bigger commitment and wider consideration at a UK level provides a better context of scale. As we have heard, individual GPs sometimes are not good at responding to particular needs or realising the importance of a condition because they do not see enough instances of it. That problem applies not only to GPs but, more broadly, to other services and public management bodies.

I hope that, during the Minister’s tenure, the Joint Ministerial Committee, which brings together Ministers from the devolved entities as well as those from Whitehall, and the British-Irish Council will undertake initiatives to examine whether we can learn lessons from one another. When I was a Minister in the Northern Ireland Assembly, I was privileged to attend the council’s very first meeting. I remember the late Donald Dewar saying that one of the most undervalued art forms was plagiarism and that we needed a vehicle to bring together public policy planners and overseers, such as Ministers, from different parts of these islands. We need that not just in order to see who is doing well at what and to copy them, but in order to be honest and admit what we are all doing badly; to discuss the serious issues that we are not doing enough about; and to constantly agree, as public representatives, that more should be done and that there should be better laws, better services and better funding. If we cannot do enough of that in relation to our own individual pressures, perhaps the British-Irish Council and the Joint Ministerial Committee can together ask some of the fundamental questions, at the heart of government, that were raised by the hon. Member for Weaver Vale.

I have the temerity to believe, Mr Davies, that this debate might finish early, so I will make a brief contribution. I congratulate the hon. Member for Weaver Vale (Graham Evans) on introducing the topic. His preamble was very touching—I have a vision of him as an enormously public-spirited child, raising money for charity. He has clearly carried that public-spiritedness into later life and into politics. I disagree with him, however, about the poshness of Wolseley cars—there were certainly some fairly ordinary Wolseley cars in my day.

I want to elaborate on my intervention on the hon. Gentleman. He explicitly said in his articulate presentation that he has some concerns about the abolition of the specialist commissioning bodies that were set up by the strategic health authorities. Such concerns have been generally well recorded by a number of people with an interest in a variety of rare diseases, not just those of a muscular kind. Although renal problems are not particularly rare, the SHA in my constituency has dealt with the huge problem of elderly people needing renal services by saying that those services need to be in Southport where the demand is. A facility has been produced that is beyond the cost limits of the primary care trust: in fact, it is a regional facility and has been established on the basis of a regional strategy.

The case has been well made across the piece that we need specialist commissioning groups. They have been necessary to deal with rare diseases and to construct the necessary clinical networks. Often, people need not a specialist secondary care facility, but adequate facilities and therapies in the primary care setting. Moreover, those facilities need to somehow integrate, talk to one another and form a clinical network.

What will happen when the SHAs and, presumably, the commissioning units that they set up go? I hope that the Minister will solve that problem. There are two possible answers to the question. The first is that we do not know. The other answer—the Minister may wish to enlarge upon this—is that we will get outposts of the national commissioning board that will do very much the same job as the SHAs. If we have regional commissioning groups, which are generally aware of what is required in the region, we replicate the existing solution, which may be perfected and improved in the process. Few would have problems with that. Some would question the necessity to deconstruct then reconstruct everything, but such a solution is acceptable to many who are concerned about a range of rare diseases, including those that the hon. Gentleman has spoken about. Therefore, my single, simple contribution to this debate is to pose the Minister a question: is that the solution to the problem and, if not, what is?

It is a pleasure to serve under your chairmanship, Mr Davies. It is also a pleasure to take part in Westminster Hall debates, which I usually find to be of much higher quality than those in the main Chamber. It is a shame that so few people attend these debates, because they can be outstanding.

I found today’s contribution by the hon. Member for Weaver Vale (Graham Evans) profoundly moving, and I am grateful to have had the opportunity to listen to him. The image of him selling rulers in the playground will stay with me, and those with muscular dystrophy are lucky to have such a passionate and committed campaigner on their side and in their corner. I too shall always remember to plagiarise Donald Dewar, but in a much less generous way than the hon. Member for Foyle (Mark Durkan). He attributed to Donald Dewar the phrase that plagiarism was undervalued, but I fear that I will simply use it as my own from now on.

Joking aside, this is a serious issue. I was not aware that there are 60 types of muscular dystrophy and that 1,000 children and adults in every 1 million of the population are affected by the disease. It is hugely important to learn such things in my job. It is unfortunate that so few people know about them and that I have to be in this position to learn about them. It is also of great interest that 8,000 people are affected by the condition in the north-west region. We have heard how aggressive Duchenne muscular dystrophy is, and the effect that it has on young boys is a great worry. I have also learned about the stupendous work of Stefan Spinty; it is important to remind the Department of Health that he is trying to run his network without any funding.

In broader terms, treatment for muscular dystrophy in the north-west faces two challenges. The hon. Member for Foyle touched on the first, which is the challenge of cutbacks to services in general. We heard of the cutbacks to special assistance for those with muscular dystrophy in the hon. Gentleman’s area. The cutbacks to mobility and adaptation in relation to people’s homes are larger concerns. Those things are very worrying.

The other challenge relates to the changes in GP commissioning coming at us if the Health and Social Care Bill is passed. We heard this morning that GPs often do not have a great deal of expertise in relation to muscular dystrophy. One could quote statistics that GPs will come across the condition only once or twice a year, but the stories we have heard from the hon. Member for Weaver Vale are more important. He talked about the woman with muscular dystrophy whose daughter clearly had the same condition, but when she told a doctor that there was something wrong with the child, she was told that she was fussing and silly. On the back of that, we heard that doctors have only about two hours of teaching on the condition, so we should all be worried about exactly what will happen to its treatment when GPs take over commissioning. The Government must reassure us about what the specific commissioning pathways will be for this condition, and what the role of the national board will be in relation to muscular dystrophy. It is only right that people with muscular dystrophy, their families and those who represent them are reassured that they will be treated properly and that their particular condition will be treated.

The hon. Lady’s point seems slightly tangential. If her argument is that what is wrong with the arrangements is the current ignorance of GPs about referral pathways, that situation has pre-existed these arrangements and may succeed them. It is an independent issue, is it not? It is not about structures.

As the structures currently stand, it is understood by GPs that they can receive back-up, through the specialised services national definition set, from the various networks that have already been established. If the national health service is to be grabbed by the ankles, turned upside down and shaken hard, the problem is that in the ensuing chaos, GPs will be distracted and, in the short term, people with muscular dystrophy might not get the services that they deserve. That is a legitimate concern, which it is only right to lay at the Minister’s door, because it is this Government who will be putting the national health service through that process.

As I have already asked, will the Minister confirm that specialist neuromuscular services will fall under the remit of the national commissioning board? How will the board work with other services, such as community nursing, speech and language therapy, and continuing care and physiotherapy, which I understand will be commissioned by GPs? How will that work, and how will people with muscular dystrophy not fall between the gaps? Will the Minister provide more information about regional commissioning—already mentioned during the debate—which might arise under the national commissioning board? It would be reassuring for many to learn that the national commissioning board might have regional hubs, but we have yet to hear that stated specifically. If it were to be stated this morning, it would be good news for many people.

The other issue that I know the Minister shares my great passion for and interest in is the importance of increasing integration of services. People with the conditions we are discussing are clearly exactly the sort of people who need integrated services, so that they can have assistance in hospital—hopefully as an out-patient—and care in the community. There is a continuing disconnect between social care and health care. We all know that when those services do not connect properly, people end up as an emergency admission. We have already heard that £68.5 million is spent across England on unpaid emergency hospital admissions for people with muscle disease.

It is clear that savings can be made, and the holy grail for all of us is to ensure that there is better integration between the various services—both between primary and secondary care, and social care and health care. The challenge in the near future is to consider exactly how the Health and Social Care Bill will help with that integration. There is concern that, in fact, it will do the opposite.

It is important that the legacy is protected. The Muscular Dystrophy Campaign has been working constructively with the 10 NHS specialised commissioning groups across England, and significant progress has been made on improvements to neuromuscular services and on an increase in the number of muscular dystrophy care advisers. In the context of the changes to the national health service and the cutbacks in funding, there is concern that a lot of that good work may fall by the wayside. This morning would be a timely moment for the Minister to reassure us that the legacy will not be lost. Will he reassure me that the work being carried out by the regional specialised commissioning groups will not be put in jeopardy following the proposed reforms for their abolition?

I congratulate the hon. Member for Weaver Vale (Graham Evans) on the passionate and powerful way in which he clearly set out the case. He has done a great service to the interests of those who suffer from muscular dystrophy and their families. I thank him for securing the debate. I also congratulate him on the work he has done in his role as a member of the all-party group on muscular dystrophy, not only for his region but in raising the issue more thoroughly around the country. I join him in paying tribute to the work of the Muscular Dystrophy Campaign and the North West Muscle Group. Both those organisations operate as powerful advocates for people affected by these lifelong and life-limiting conditions.

It is 18 months since the all-party group published the Walton report, which showed how far we had to go—as the hon. Gentleman has described only too clearly— to improve the care of those with muscular dystrophy and other neuromuscular conditions. There are historic weaknesses. The intervention of my hon. Friend the Member for Southport (John Pugh) just now underscored that point. There are weaknesses in the current system and in how we organise the things that have rightly been highlighted by today’s debate.

There is a real sense of urgency for change, not least because of the simple fact that we know about the huge personal and family costs of this condition and how it impacts upon people’s lives. Unless care is properly co-ordinated and well conducted, NHS resources will be wasted. They will be invested in the wrong places and will not deliver good outcomes. That cannot be acceptable in our modern health care system. Several colleagues alluded to the costs. The figure of £13.6 million was mentioned as the overall cost of unplanned hospital admissions for those with neuromuscular conditions in the north-west. If we analyse the journeys that people make through our health care system, that shows the actual cost.

Some hospital admissions are necessary and unavoidable. A person who contracts a respiratory infection is a good example of where there is an unavoidable need. However, if we consider the figures in greater detail, the number of people admitted for non-invasive, elective care, shows that there are many preventable costs in the system. That amounts to just under £5 million in the north-west alone. Those costs could be avoided and the money could be spent better. That has to be a key message. It is not just about spending more; it is also about spending better in our system. We need to ensure that we consider the economic case for investing wisely in services that can, in fact, provide a better quality of life. We must also ensure that we avoid unnecessary admissions in the first place.

Positive steps have been taken in the north-west. That progress has been hard fought, and it deserves to be recognised and applauded. Indeed, the strategic health authority has told me that £4.2 million has been spent on developing neuromuscular services over the past four years. As mentioned, a dedicated neuromuscular service at Alder Hey has been set up to provide excellent care for children. Out of that £4.2 million, £289,000 was invested as a commitment to the service provided and led by Dr Spinty. There appear to be some grounds for dispute over whether such services are funded or unfunded. However, we certainly need to keep ensuring that resources go in. There is a case to be made for ensuring that resources are well spent. Paediatric critical care services have improved with a dedicated paediatric intensive care transport team. There are additional beds at Alder Hey and the Royal Manchester for ventilation services, with similar investment in both invasive and non-invasive respiratory services for adults, too.

Although those developments are welcome, the local NHS accepts that many issues still have to be addressed, many of which have been aired today. The specialised commissioning group is responding to the Walton review by reviewing the region’s neuromuscular services. In essence, that review group—made up of clinicians, commissioners, patients and families—is aiming to address exactly the issues aired today: how to improve the poor support available to those diagnosed with neuromuscular conditions in adulthood; how to address the variability and patchiness in the availability of specialised neuro-rehab and wheelchair services; and how to improve transitional arrangements to help young people to move from paediatric to adult services. That is an absolutely key issue that comes up time and again in relation to rarer conditions when considering how well or how poorly the NHS manages those vital transitions from child and adolescent services to adult services.

The review group has updated the all-party group on muscular dystrophy on the review’s progress. On the kind invitation that has been extended to me to attend the meeting of the all-party group, I do not know whether I can attend on the specific date mentioned. However, I will certainly undertake to attend a meeting of the group as soon as I can and take questions from the group’s members.

I understand that the NHS North West specialised commissioning group will consider the review’s recommendations in March, and that the full report will be published shortly after. Clearly, I do not wish to pre-empt that report in any way but, based on the conversations I have been having in preparation for the debate, I think that the review team is asking some important and necessary questions. Those questions are on sharing best practice to ensure greater consistency, on work force planning, so that there is better co-ordination and leadership across care pathways, and on finding efficiencies across the system in line with the region’s quality, innovation, prevention and productivity plans.

The key to all of this is to have a much clearer split of responsibility—a sense of joined-up access across the care pathways to deliver a less fragmented and more person-centred approach to planning. I will say a bit more about the point that the hon. Member for Islington South and Finsbury (Emily Thornberry) raised on that in a moment. For me, the greatest challenge for the modern NHS is how to make sure that we have much more joined-up delivery. We have to accept that care and support for those with long-term conditions is a particular area where we do not get it right often enough, and it is unfinished business. There is too often a disconnect between what is commissioned at a regional level by specialised commissioning groups and what is available at a local level as commissioned by primary care trusts. It not only confuses patients and compromises both their care and quality of life; it also leads to inefficiency and duplication within the system.

Putting that right means thinking radically. It means putting greater emphasis on managing pain and helping people with multiple conditions. It means finally developing a personalised system to end the attachment to bricks and mortar institutions and to reinvent health care in a modern context—a health system that is much more about what can be delivered in the home and in the community than it is about clinics and consulting groups.

When it comes to long-term conditions such as muscular dystrophy, attention tends to fall on specialised commissioning groups, and that is what has been rightly talked about today—the response in terms of tertiary care. Tertiary care is clearly important. We can see, from the important work at Alder Hey and Royal Manchester children’s hospital, the difference that such specialist centres can make. However, there also needs to be an equal onus on community-based support—the ongoing day-to-day care that is so important to support quality of life and to keep people out of hospital in the first place.

Primary care trusts and in the future GP commissioning consortia and health and well-being boards, not the specialised commissioning teams, will be responsible for that. They will shape the services that clinicians and social care need to provide to meet the needs of patients, such as hydrotherapy, wheelchair services, speech and language therapy, respiratory support and help with swallowing. It is therefore essential to have better co-ordination, a better link-up between commissioning teams across health and social care and beyond, and, rather than individual bits, a person-centred approach to planning across the whole care pathway. That needs a whole life course approach, which is why I return to the point that we need a focus on transitions between childhood services and adult services. The review’s recommendations will help to bring that about in the north-west. I look forward, as I am sure the hon. Member for Weaver Vale does, to its publication and to it being put into effect.

To take the case of specialist physiotherapy, the SHA recognises that there is pressure on tertiary centres, which is something that the hon. Gentleman talked about. The challenge must be met by a whole system approach that makes full use of the available resources. NHS North West tells me that it is already mapping out in more detail what neurophysiotherapy services are available across the north-west. The current specialist physiotherapists are being encouraged to work with community physiotherapy to improve their skills and to help them to offer appropriate services at a local level. That outreach to upskill other parts of the work force will be a key way to improve delivery. I understand that Manchester PCT is also doing some exciting work in piloting a neuro-rehab service that treats people at home or in the community, rather than in a clinic. That brings into relief the potential benefits of integrating tertiary and community-based services—of how, by doing things differently, we can improve services for patients.

The hon. Gentleman talked about the NICE guidelines. He is absolutely correct, as are other hon. Members who have spoken in the debate: we need greater consistency, and being more consistent means being clear about what “good” looks like. I have already mentioned NHS North West’s neuromuscular services framework, which is a helpful starting point for bringing different organisations together. My hon. Friend the Member for Southport also raised the issue of the need for clinical networks, and I will say a bit more about that in a moment. The review group is also making the case for the clinical networks and clinical network managers to provide leadership, to share best practice, and to provide challenge to commissioners. Again, that would seem to be a sensible approach not just in the north-west, but around the country. I would expect the NHS commissioning board to help to take that forward when it takes up the reins of specialist commissioning.

Of course, another issue mentioned by hon. Members is the need for clear guidelines and quality standards from NICE to cover muscular dystrophy and various aspects of the delivery of care and treatment for people with the condition. I hope that Members understand that it is not for me to direct NICE. Its strength as an organisation rests on its independence from Government, and therefore I will not compromise that. What I will do, and which is important to do, is ensure that it is made aware of today’s debate, so that it can take it into account in its deliberations. The East of England specialised commissioning group is leading on quality standards work and service specifications, so there is work to help influence that going forward.

Another influence on NICE are the conversations with the leadership group of the Neurological Alliance on how it can develop stronger clinical advice for a range of rare neurological conditions. I strongly urge the Muscular Dystrophy Campaign to actively engage with that leadership group, so that it is also at the table with NICE. NICE is part of that forum, which presents an important opportunity to achieve faster progress and effective action. We are also, in the context of the work of health and well-being boards and GP commissioning consortia, looking at how to update the guidance for joint strategic needs assessments. I urge the Muscular Dystrophy Campaign to have an input, through the Neurological Alliance, on that work, too.

Equally, the National Quality Board is working on a broad library of quality standards to cover all areas of NHS care. Again, there will be opportunities for the Muscular Dystrophy Campaign and others to feed into that process. Input through the leadership group of the Neurological Alliance would be a very effective way of getting its voice heard.

Careers and training have been referred to in the debate. I suggest that, rather than a Minister trying to dare to dictate the curricula of the medical professions, it might be more prudent to ensure that they are also aware of this debate, with a covering letter from me to draw it to their attention so that they can take it into account as they reflect on future curricula.

On the issue of advice and support for patients, a strong case has been made for the case-management approach. It is important that we look outwards to patients and their families. At the moment, people with long-term conditions can feel disempowered and frustrated by the complexity of the system. It can be a fight, as the hon. Member for Weaver Vale has described, to understand what is available. As the hon. Member for Foyle (Mark Durkan) rightly said, it should not be the case that every time someone enters the system it feels like they are navigating it for the first time, as if no one else has ever gone through that before. That is a perfect way of describing how the system should not feel and how it must not feel as we go forward. The hon. Member for Weaver Vale described the example of Liam. That example makes a very strong case for increasing the number of neuromuscular care co-ordinators, who are known to be extremely helpful in improving patient care and outcomes. I understand that that is something that the review group is exploring and it will, through its contracting arrangements that go beyond that, help to drive that forward. I have no doubt in my mind that there is a strong economic case for the co-ordinators.

I am also pleased that the Manchester PCT is looking at how personal budgets can be used to help people with neuromuscular conditions to get the help they need. Personal budgets are more than a lever to give patients more control. They can be a catalyst for bringing services together around the needs of the individual—another way in which we can integrate at an individual level. In fact, a number of the pilots that are testing personal health budgets are actively involving people with neuromuscular conditions.

The final question, asked by both my hon. Friend the Member for Southport and the hon. Member for Islington South and Finsbury, is how do we maintain continuity during the transition period? The Health and Social Care Bill is clear that highly specialised services would, in future, be commissioned by the NHS commissioning board. I can confirm that this condition is included among them, as it is already designated as a specialist commissioning area. The board will decide how best to organise itself to deliver, on a case-by-case basis, different commissioning activities on different specialist conditions. It would be wrong, when the Government are saying in the Bill that we are giving autonomy to an NHS commissioning board, for the Minister to then specify, in an Adjournment debate, to the nth degree precisely how the NHS commissioning board should discharge that function.

The NHS commissioning board has that responsibility, and that comes with a responsibility on patient and public engagement as well. It is important that lessons from existing experience of specialised commissioning are drawn together to inform the way in which those responsibilities are discharged in the new system. I will undertake to ensure that this debate is drawn to the attention of those who are doing that work at the moment. Again, I think that the Specialised Healthcare Alliance provides the Muscular Dystrophy Campaign with a way in to influence and shape those opportunities. I note from comments to the Health Committee before the general election that there was a recognition that we could do much more by moving to a national commissioning board that can streamline, simplify and ensure greater consistency around contracting for these services.

That brings me to the other element of the new architecture, which is general practitioner commissioning consortia. Clearly, integrated planning between consortia and the NHS commissioning board will be essential, just as joint working between primary care trusts and specialised commissioning groups is at present. I am keen that strategic health authorities will encourage GP pathfinders, along with the early implementers of health and well-being boards, to work with the specialised commissioning groups to explore how the relationship can work best on the ground so that we develop the best case examples to inform the system as we move to the new arrangements.

As the hon. Member for Weaver Vale rightly highlighted, GP consortia will need advice and guidance as they take up the reins. There will be a great opportunity for patient groups to step in and provide support in that way, and I would certainly encourage that kind of active engagement. Also, health and well-being boards will have a key role as system integrators—they will have a major part to play in developing the more joined-up system. We will consider whether that is enough or whether we need to do more as we scrutinise the Health and Social Care Bill clause by clause in the coming weeks. The most effective way of operating will be through the regional networks that the Neurological Alliance is setting up. Again, I hope that the Muscular Dystrophy Campaign will be part of that.

Yes, we have to ensure that we get specialist commissioning right, but we also have to ensure that we get commissioning for long-term conditions in general right, and we have to do that at a local level.

I thank the hon. Gentleman for securing this debate and for setting out the issues so clearly, and I thank other hon. Members for their contributions. We know that there is much to do to improve the care of those with neuromuscular conditions, and that we are not doing enough yet. We know that the system that we inherited has not delivered uniform and consistent access to services—we must do more. We also know that financial pressures should not block progress because, all too often, action here saves money that can then be better spent on improving the quality of services.

I look forward to reading the final report of the north-west review group—and, indeed, the other reviews that are taking place—and I hope that it can be a catalyst for real improvements in the years ahead. The hon. Gentleman is right to say that we have to translate the intentions behind the review into tangible actions that transform the lives of his and many other hon. Members’ constituents up and down the land.

Sitting suspended.