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Muscular Dystrophy

Volume 475: debated on Wednesday 14 May 2008

Motion made, and Question proposed, That this House do now adjourn.—[Liz Blackman.]

Thank you very much, Mr. Deputy Speaker, for allowing me to raise the important issue of the provision of specialist diagnostic treatment and care services for sufferers of muscular dystrophy. Today has seen the publication of the report by the Muscular Dystrophy Campaign, “A Focus on Physiotherapy”, a lobby of Parliament by many of those involved in campaigning for the best possible services for muscular dystrophy sufferers, and the delivery of a petition to the Prime Minister at Downing street on the same theme.

One of the consequences of the considerable investment in the NHS over recent years under our Labour Government is that we are developing ever more expertise and world-class centres that can offer specialised services for particular conditions. However, although more than 60,000 people in the UK have muscular disease or a related condition, we are often talking about relatively small numbers of patients needing specific services in any one area. It is therefore difficult to see how this level of specialist service could be provided in every single locality. If services are not provided in every area, two difficulties arise: that of funding for access to the services, and that of sufferers having to make long journeys.

One of the reasons that I requested this debate was the distressing evidence we heard in the Welsh Affairs Committee about families who were experiencing delays and difficulties in accessing the specialist services that they needed for family members suffering from muscular dystrophy. But this is not simply an issue in Wales or an England-Wales cross-border issue—far from it. The same problems arise in different regions of England, where there are disparities in ease of access for sufferers because of the differing approaches of primary care trusts.

There is a tendency, when we think of specialists, to think of consultants and to forget that other health care workers, such as nurses and physiotherapists, develop specialist skills. The Welsh Affairs Committee heard evidence that patients were sometimes referred back to a consultant when a referral to a specialist physiotherapist would have been possible, as well as perhaps being cheaper and involving less waiting time.

One of the problems highlighted by the parents of my constituent, Matthew Barrett, who came to lobby Parliament today, was that they often have to attend many different appointments with different specialists in different hospitals. Does my hon. Friend agree that the provision of more clinics in which specialists could come together would help patients in that regard?

Indeed. I certainly applaud the multidisciplinary approach, which is extremely important. We need to think of imaginative ways of providing specialist services as close to patients’ homes as possible.

There must be a much greater understanding among PCTs and GPs that physiotherapists can now acquire a specialist body of knowledge to enable them to provide a far more effective service to muscular dystrophy sufferers than can be provided by physiotherapists without that additional training.

Muscular dystrophy sufferers can find themselves being referred to the local physiotherapy team for a standard six-week course of treatment, designed principally for someone who has suffered a minor injury with no complications. There is often no alternative, because a PCT does not recognise the need for specialist services and might therefore consider the usual physiotherapy package sufficient. However, muscular dystrophy sufferers need a much more comprehensive service to provide ongoing, consistent specialist care, rather than whatever can be accessed easily and quickly.

Our first priority must therefore be to recognise neuromuscular services as specialised services requiring multidisciplinary management of care. I should therefore like to ask the Minister what steps he will take to ensure that the NHS national specialist commissioning group recognises neuromuscular services as specialist. A national group of the UK’s leading experts on neuromuscular conditions agrees that patients with muscular dystrophy require specialist care and specialist expertise, which are best delivered by a multidisciplinary team of professionals.

The provision of expert physiotherapy, orthotics, early cardiac monitoring and intervention, and corticosteroids has been shown to improve muscular function and maintain independent mobility. However, neither the NHS national specialist commissioning group nor Health Commission Wales recognises the service as specialist. As a result, patients with muscular dystrophy, both in Wales and England, fail to receive a package of care and either have to travel long distances to access services or do not receive any services at all.

In asking the Minister what steps he will take to ensure that the NHS national specialist commissioning group recognises neuromuscular services as being specialist, I would like to point out to him that designating muscular dystrophy services as specialist would give them the recognition that they need and raise the question of how those services can best be provided locally. There is absolutely no doubt in my mind that we need to acknowledge that the survival and quality of life of some patients with neuromuscular conditions are being compromised, as they do not have access to specialist diagnosis and a multidisciplinary package of care.

We need to pay particular attention to the significant geographical inequalities across the UK in access to specialist health services for children and adults with neuromuscular conditions.

As chair of the all-party carers group, I was very pleased to hear you emphasise the need for local delivery of services. Earlier today, I met Mr. Ray Thomas, who has been a carer for more than 40 years. He attended today’s lobby and told me that he had not been to London for 49 years because of the intense care he and his wife have given to two sons, and now one surviving son, Leighton, who has the very rare condition of Becker muscular dystrophy. James, in my constituency, has Duchenne muscular dystrophy. Those families, including parents and grandparents, have enormous pressure placed on them, and when they have to travel great distances, the pressure is all the greater. Would you agree with me that when the Government, either in Wales or England, devise support assistance, the needs of the carers, particularly the parents and grandparents, have to be taken into account?

Order. Before the hon. Lady replies, I must point out to the hon. Gentleman that he should address the Chair. When he uses the term “you”, he is involving me, which he should not do.

I would like to thank my hon. Friend, who has done outstanding work as chair of the all-party carers group, for raising that issue. It certainly has an enormous impact on the whole family if people have to make frequent journeys over long distances to access the treatment that the family member with muscular dystrophy needs.

We need to recognise that even in the areas where excellent services are in place, people can often be vulnerable, given their dependence on a handful of leading clinicians who in time may move on or retire. I therefore ask the Minister what steps he will take to work with the commissioners of health services and health professionals to improve current service provision across the UK. In particular, what will he do to press the devolved Assemblies and local commissioners of health services to ensure that all patients are able to access specialist diagnostic services and specialist multidisciplinary services across the UK to ensure that adequate diagnosis and care is provided for these complex diseases?

I pay tribute to the Muscular Dystrophy Campaign for its hard work in producing the report, “Building on the Foundations: Focus on Physio”, which includes responses from 75 primary care trusts and 122 NHS trusts to date. The key findings of the report include the fact that many patients with neuromuscular conditions do not receive continuous, specialist physiotherapy or any physiotherapy at all. In some areas, local provision is very poor. It notes that current referral practices, particularly for adults with neuromuscular conditions, seem arbitrary and show considerable variation for patients. We certainly heard that in the evidence given to the Welsh Affairs Committee.

The report also notes that adults with neuromuscular conditions, principally young adults making the transition from paediatric to adult care, face particular difficulties. That is a matter of concern to me because we know that, at that time in their lives, those people are often going through many stressful changes, perhaps from the education system to a workplace scenario, which can be a very difficult time for them socially, educationally and medically.

Where there are specialist physiotherapy services, many are vulnerable because they rely on voluntary sector funding, and many physiotherapists are denied opportunities to attend training courses relating to neuromuscular conditions. Sadly, there is a lack of guidelines and standards of care for people with neuromuscular conditions.

Let me be more precise. What can my hon. Friend the Minister do to ensure that all children and adults with neuromuscular conditions are offered, and have access to, ongoing and timely physiotherapy, including hydrotherapy, when they need it? In particular, what action can he take to ensure that specialised commissioning groups, acute trusts and local health boards have a better understanding of the positive impact that physiotherapy has on the health and well-being of people with neuromuscular conditions, and to press them to give more physiotherapists support and training in muscular dystrophy and related conditions as part of their continuing professional development programmes?

How will my hon. Friend ensure that a multidisciplinary service is in place for the care of patients with neuromuscular conditions, and how will he encourage specialised commissioning groups to establish neuromuscular working groups to undertake reviews of local services following the lead in the south-west? Any such review should include a gap analysis of physiotherapy services for patients with neuromuscular conditions.

Clearly it is not for my hon. Friend to tell the Welsh Assembly how to organise the service in Wales; that is rightly within the powers of the Assembly Health Minister and her colleagues in the Welsh Assembly Government. Nevertheless, there can be huge benefits in sharing ideas and training across the whole of the United Kingdom, and in the case of muscular dystrophy, sufferers from Wales are currently accessing services in England. With that in mind, will my hon. Friend discuss the best way forward with colleagues in the Welsh Assembly Government, and will he ensure that there are no obstacles on the English side for patients from Wales who wish to access appropriate services in England? Will he also agree to meet me and representatives from the Muscular Dystrophy Campaign to discuss the evidence that has been uncovered as part of the charity’s “Building on the Foundations: Focus on Physio”?

Modern treatments and care have facilitated huge steps forward in increasing life expectancy and improving the quality of life for people with muscular dystrophy, but we must ensure that the very best packages are provided routinely for muscular dystrophy sufferers wherever they live. Some of the detail of the report is quite distressing. We learn that three out of four of 122 NHS trusts and two out of three of 74 primary care trusts do not provide ongoing physiotherapy for patients with muscular dystrophy and related conditions, that half the trusts do not have physiotherapists available for children, that two out of three do not have physiotherapists available for adults with specific training in muscular dystrophy and related neuromuscular conditions, and that 20 per cent. fail to provide financial support for physiotherapists to attend training courses in muscular dystrophy and related conditions. With that distressing picture in mind, we must ensure that we put the position right, and that muscular dystrophy sufferers and their families do not have the additional burden of fighting for funding or coping with excessive travelling if there is any way that that can be avoided.

We must understand that we are not talking about people coping with a one-off acute medical condition. We are talking about an integral part of the daily and yearly struggle to maintain the best quality of life possible, and we should want nothing but the best for our fellow citizens who are living with muscular dystrophy. I look forward to hearing the Minister’s response.

I congratulate my hon. Friend the Member for Llanelli (Nia Griffith) on securing a debate on a very important issue. It is particularly important to families who must cope with the realities of muscular dystrophy. I have experience in my constituency of a couple, Mr. and Mrs. Levene, whose young son Joey has Duchenne muscular dystrophy. They are a remarkable couple, because not only are they coping with Joey’s condition, but they have established a charity to raise significant sums of money to invest in new research into the condition. If my hon. Friend will forgive me, I would like to use this opportunity to pay tribute to them for making a tremendous difference by raising funds to invest in research.

We are all aware that neuromuscular services do not always adequately meet the needs of people with long-term conditions, not least the estimated 30,000 people living with muscular dystrophy, their families and carers. Three recent hard-hitting reports published by the Muscular Dystrophy Campaign on the provision of neuromuscular services in England and Wales and access to physiotherapy services highlight the significant variations that still exist for those living in some areas of England and Wales. In particular, these reports detail the problems that some patients with muscular dystrophy continue to have in getting access to, and funding for, the specialist neuromuscular services that can make such a difference to their standard of care and quality of life. It is clearly unacceptable that there are still such large variations in care, and that access to specialist diagnosis, treatment and on-going care services can far too often still depend on where people happen to live.

It is important that we are clear about what people have a right to expect—access to health professionals with an understanding of their medical condition and individual needs; timely access to the appropriate specialist neurological services and equipment; information on their condition, communicated in a more sensitive and understanding way; and close involvement for carers and families. We should recognise that in these circumstances it is the family member who in the end provides most of the care and support, and that they need both practical and emotional support.

There are a number of issues in terms of the specific point raised by my hon. Friend, and addressed in the Muscular Dystrophy Campaign reports, that specialised neuromuscular services should be designated in accordance with the Department’s specialised services definition set so that specialised commissioning groups can strategically plan for these services across the whole of England. The national specialist commissioning group advises Ministers on which services are best commissioned nationally, rather than locally. The criteria used are that the service should involve a small number of patients and procedures—fewer than 400 nationally per year—and that the service can be provided at a small number of specialist centres serving a catchment population of about 1 million. Specialised services can also be commissioned regionally by the 10 specialised commissioning groups that are based around regional strategic health authority boundaries. There is a national definitions set of 32 specialised services to assist SCGs, and SCGs can commission services outside that list; it is up to individual SCGs as to whether they decide to designate additional specialist service providers in their patch, and if so, for what services. The south-west commissioning group has, for example, established a neuromuscular working group with a specific remit to review local services.

Could that model not be rolled out in other parts of the country, as I understand that the review has made good progress?

What I am happy to say to my hon. Friend is that that is best practice and we would hope that in every part of the country where there are clear inadequacies in the level of support and services, regional SHAs would look at the south-west model and ensure they learn from it in their region. It is not for me as a Minister to direct every SHA and primary care trust as to how they ought to approach these issues, but it is clear that existing services are in many cases inadequate, and it is a good principle that if the south-west model demonstrates a sensible way forward, each region should follow it.

It is for NHS commissioners to ensure that commissioned pathways of care always reflect both the specialist diagnosis needs and localised multidisciplinary packages of care. PCT commissioners need to commission services that reflect the local needs of their patients and be informed of good practice in other health economies. I agree with my hon. Friend that dialogue between Wales and England on these matters would be sensible, and I am certainly willing to facilitate it.

We recognise that world-class commissioning is at the heart of our health service’s capacity to achieve better outcomes for patients and better value for money, which is why we are driving the notion of world-class commissioning through the health service. We want such commissioning to become a reality in every community, because that is clearly not the case at the moment.

In improving the commissioning of services, the establishment of local involvement networks is important. They will play a key role in encouraging and enabling a wide range of people to influence the commissioning and provision of health and social care, bringing real accountability to the whole system, from commissioning to direct provision. It is important that part of how we improve services is by giving a much stronger collective voice to local populations and local groups associated with specific conditions. They can influence the decision makers in the health and social care service to ensure that services are more responsive. We cannot simply leave this to managers, bureaucrats or professionals; we need to find ways of ensuring that the voice of those who know best about such conditions is heard.

My hon. Friend raised the specific issue of access to physiotherapy services, and she emphasised their distinct importance for those living with muscular dystrophy. It is important to point out that record levels have been invested in the NHS and that there has been a major expansion in its work force; for example, the number of physiotherapists employed in the NHS has increased by 41 per cent. since autumn 1997, to pick a random date.

The White Paper, “Our health, our care, our say”, sets out the future direction for health care, including access to allied health professions. The Government are collaborating with the Chartered Society of Physiotherapy to pilot and evaluate self-referral to physiotherapy, and we await the report of that evaluation. There is a sense that it is often difficult to access the service, so simplifying things and allowing people to self-refer will provide expanded access to physio services.

The national framework for long-term conditions was published in March 2005 and has a 10-year implementation period. It sets 11 quality requirements to improve treatment, care and support from diagnosis to the end of life for people living with neurological conditions, including muscular dystrophy. It underlines the need for appropriate, integrated services planned and delivered around individual needs, and the need to support people in living as independently as possible with the best possible quality of life.

The national service framework is based on the best of the NHS’s core values: modernisation; breaking down professional boundaries; and partnership between agencies. Although it focuses on improving services for people with neurological conditions, people who have other long-term conditions will also be supported to live a full and independent life. Achieving the standards set out in the national service framework is a major challenge for some local providers. There are no central targets or milestones, and it will instead be for people working at local level, on the front line, to ensure that their commissioning decisions truly reflect the NSF’s principles.

Since the NSF’s publication, the Department has provided service planners, commissioners and providers with guidance, expert advice and support to help them deliver the quality requirements. However, in line with our policy of devolving responsibility to local organisations, we are moving to a phase with much greater emphasis on local accountability and local autonomy. Our approach also recognises that the NSF cannot be a stand-alone priority; it needs to be closely aligned and integrated into mainstream NHS and social services local activity.

Importantly, the Berlin wall between health and social care came down a long time ago, but, sadly, patients and their families in too many communities tell us that the Berlin wall between different agencies prevents them from getting the easy-to-access services that they need and deserve. As has been mentioned by Labour Members, they also tell us that there are sometimes too many professionals fishing about in people’s lives and that people want continuity of care, care co-ordination and a lead professional who takes responsibility for examining all the family’s needs. It is incredibly important that we position how we deal with this condition in the context of what we are trying to do with health and social care more generally.

Just this year, the Department, in collaboration with the third sector, published the “National Service Framework for Long-term Neurological Conditions—National Support for Local Implementation 2008”. It outlines the Department’s NSF programme, including how much progress we have made so far and the milestones for the work that we still have to do. It offers people support at a local level in terms of best practice for how they can improve services. It has also received input from voluntary organisations, which are often ahead of the NHS in this field.

I have said a bit about how the NHS and social care are supporting people with long-term conditions. Our other public services and voluntary organisations are crucial, too, to ensuring that people have the best possible quality of life in these incredibly difficult circumstances.

I also want to take the opportunity to pay tribute to the Muscular Dystrophy Campaign. Over the past 40 years, it has ensured that the condition, which has not always had a high status or been taken as seriously as it should be, has been given a loud national voice. As a consequence, major advances have been made over the past 10 years that were not made in the preceding 30 years. As well as its campaigning role, the charity provides important information and advice to families in these circumstances. It provides part of the cost of equipment for patients and makes a significant contribution to research into the condition.

I welcome the fact that my hon. Friend the Member for Llanelli has brought to the attention of the House a crucial issue for a number of families in our country. I shall reflect on her contribution and I, or a relevant ministerial colleague, will meet her to discuss how we can improve the experience of the services for families and for people who have the condition.

Question put and agreed to.

Adjourned accordingly at twenty-two minutes past Eight o’clock.