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Health: Neuromuscular Services

Volume 726: debated on Wednesday 30 March 2011

Question for Short Debate

Asked By

To ask Her Majesty’s Government what is their assessment of the current provision of specialist neuromuscular services in England.

My Lords, I begin by declaring my interests. I am a trustee of the Muscular Dystrophy Campaign and have limb girdle muscular dystrophy myself. I raise this Question for Short Debate because there are significant gaps in accessing specialist neuromuscular care services in England, which I shall highlight. I have some questions about them for the Minister, who has been a welcome supporter in the past of the All-Party Parliamentary Group on Muscular Dystrophy.

On the positive side, some very encouraging steps have been taken by the Department of Health in developing a service plan. As I have no right of reply at the end of the debate, perhaps I may take this opportunity to thank all those who are to follow me and who will, I am sure, broaden out the debate into other areas involving neuromuscular services. I shall concentrate on muscular dystrophy and its related conditions.

There are more than 60 different types of this disease and related neuromuscular conditions, affecting about 60,000 people in England, both children and adults. These disorders can be genetic or acquired. Some conditions, such as Duchenne, which affects mainly boys, are particularly aggressive. They cause progressive muscle-wasting, weakness, orthopaedic deformity and cardiac and respiratory compromise, and result in premature death. It is possible, even in the 21st century, that many boys with Duchenne may die before they get beyond their teens if they do not have access to the specialist care they need. If specialist care, such as the provision of night ventilation, is available, then life expectancy can be more than doubled. This is why the provision of specialist services is so important. It can literally mean the difference between life and death.

Specialist multidisciplinary care has been developed by leading clinicians as the best model for delivering effective care for these complex multisystem diseases. The provision of expert physiotherapy and early heart monitoring, for example, has been shown to improve muscle function and maintain independent mobility. However, this kind of care simply is not happening everywhere yet, which demonstrates why a national neuromuscular services plan is so vital for all parts of the country. An example of what that plan should address is the problem of preventable unplanned emergency hospital admissions as it is estimated that as much as £68 million of unnecessary money is spent each year across England for people with these conditions.

While on the issue of hospitals, I should like to pay tribute to the clinicians and staff—and, in particular, to Professor Mike Hanna—at the National Hospital for Neurology and Neurosurgery in Queen Square here in London, who look after so many of us with muscular dystrophy in and around London. As it is a leading centre of excellence in this field, I know that they would welcome a visit from the Minister if he could find time in his busy diary. He will also learn about the exciting research going on there at present, which we all hope will lead to treatments in the near future.

I spoke a minute ago about the All-Party Parliamentary Group. We were delighted at the session on 9 March to learn that the NHS has taken ground-breaking steps towards a national neuromuscular service plan. Teresa Moss, director of the National Specialised Commissioning Team, told MPs and Peers that neuromuscular services will be a priority in the annual work plan of each of the 10 specialised commissioning groups across England, covering key issues such as specialist physiotherapy—which I hope includes my particular hobby horse, hydrotherapy—access to specialist equipment such as the right wheel chairs, an audit of unplanned emergency hospital admissions, the provision of well-qualified neuromuscular professionals across England, and the establishment of a single service specification defining specialist neuromuscular services. Each specialised commissioning group will nominate a multidisciplinary team to look at a range of issues to see what improvements can be made. This work will be used to support the national approach to the commissioning of specialised neuromuscular services. I hope the Minister will agree that this amounts to the first ever national strategy for neuromuscular services and is to be welcomed.

However, in welcoming this initiative, we should not forget the gaps—the significant gap being that there are currently no NICE guidelines for neuromuscular conditions which would give formal recognition to standards of care. Sir Mike Rawlins, the chair of NICE, suggested an application for NICE-accredited evidence status. An application for accreditation of a guidance manual has now been considered by the DMD Care Considerations Working Group, a cohort of 84 international experts in the condition. We also need a NICE quality standard on Duchenne, as well as one on home ventilation and respiratory support. Will my noble friend the Minister consider writing to NICE to endorse such requests?

On the Health and Social Care Bill, there is a great concern that GP and commissioning consortia may be tempted to concentrate on the delivery of services for patients with serious but common conditions, and that services for people with rare and very rare diseases may slip down the agenda when the new arrangements are in place. This worry is centred on the fact that many GPs may not see more than a few cases of patients with rare diseases in their working lives and may be not only unfamiliar with the disease but totally ignorant of the care pathway. We do not yet know the shape of any sub-national structure to the NHS Commissioning Board, and we do not know, for example, how this structure will change from the present boundaries that the strategic health authorities and specialised commissioning groups cover. I should be grateful for any steer that my noble friend the Minister can give.

In the short time that I have left, I want to raise two further matters—both in the positive camp. The first is the inspirational work done by the NeuroMuscular Centre in Cheshire—the only one in the UK. It provides not only specialist physiotherapy and hydrotherapy but employment and training through its social enterprise company, NMC Design and Print. It receives no government grant at all and is a self-sustaining model, earning fees from PCTs for its physiotherapy work, income from its business services, and fund-raised income from the local community. There is now a group of local people and families in Birmingham who are already committed to raise funds to help to start a similar neuromuscular centre in the West Midlands. If the Minister would be willing to hear more about these projects, the Muscular Dystrophy Campaign would be delighted to tell him about them.

Finally, I cannot let this opportunity go by without mentioning the importance of hydrotherapy to those with muscular dystrophy. It is particularly beneficial to wheelchair users but it is, inexcusably, a very hit- and-miss service countrywide, and a worrying new development is that many hospitals are closing their pools on the grounds of either cost or so-called health and safety. Private hydrotherapy pools are extremely expensive. There is, astonishingly, a paucity of research with hard evidence about the benefits of hydrotherapy, although there is plenty of anecdotal evidence. It is high time that it was prioritised as an accessible, affordable service.

Phillippa Farrant, the mother of Daniel Farrant, who has Duchenne and is now 19, is quoted in the Walton report as saying:

“Daniel gets hydro at school but not in the holidays because there is nowhere locally. There is a hydro pool at the local hospital, but we can’t get funding for Daniel to use it. If a group of us would like to use it, the hospital would charge us £200 for a half hour session. There is a local school for disabled people with a hydro pool, but we can’t get access to that, it’s only there for the school pupils so that sits empty in the holidays as well. There are community nurses from the hospice who would be willing to take these children for a session, even if only for once a week”.

Another wheelchair user, Laura Merry, who, together with her twin sister, has congenital muscular dystrophy, explained in the Walton report that hydro once a week costs them £20 each for 40 minutes, and that was a couple of years ago. She said that it helps her lungs and muscles a great deal.

Since I asked a Question in the House about hydrotherapy at the beginning of the year, I have had letters and e-mails from many people, including the Mercia Hydrotherapy Self Help Group, whose members mainly suffer from arthritis. They are devastated because their local hospital pool in Shrewsbury has closed. All these hydrotherapy users say the same thing, which is that this particular activity helps them immeasurably to help themselves both physically and mentally, and that it needs much better recognition by the Department of Health.

I hope that I have demonstrated why it is vital for a national neuromuscular services plan to be brought in speedily by the NHS, not only to fill in the gaps in current provision but to improve and enhance the lives of those who live with these diseases.

My Lords, I thank the noble Baroness, Lady Thomas of Winchester, for securing this debate and I congratulate the All-Party Parliamentary Group for Muscular Dystrophy—and particularly the noble Baroness, Lady Thomas, for her part in it—on its excellent work in putting such a clear focus on the current significant gaps that exist in neuromuscular care services and the improvements that are required.

The noble Baroness, Lady Thomas, has given us an excellent overview of the current situation and the positive steps being taken by the Department of Health to address the problems. However, we are living at a time of great upheaval in the NHS, much of which already seems to be under way, even though the underpinning legislation has not been fully debated, let alone passed. Therefore, how can we ensure that any improvements will be maintained?

I should like to talk about my concerns in relation to the sub-national structure of the proposed new NHS Commissioning Board and the commissioning of specialised services, which, as we have heard, are crucial for people affected by neuromuscular conditions.

As we have heard, significant progress has been made regarding improvements to neuromuscular services with an increase in the number of muscular dystrophy care advisers across England. I welcome the fact that all 10 specialised commissioning groups either have reviewed or are reviewing services for people with neuromuscular conditions, and that vital work is under way to improve access to specialised neuromuscular services. This work must be maintained in a structured approach as the new NHS Commissioning Board undertakes commissioning of specialised services.

Currently, neuromuscular services are commissioned on a regional basis by the 10 regional NHS specialised commissioning groups, with top-slicing of the PCTs. This method of commissioning these rare and very rare conditions has been endorsed by a new body of experts, the British Myology Society, which is a multidisciplinary forum of consultant-level experts on muscle disease, myasthenia gravis and spinal muscular atrophy. What will be the regional boundaries and structures that will be created under the new NHS Commissioning Board? Will the Minister also say how the transition to the new commissioning arrangements will be managed? Can he give an assurance that the development of neuromuscular services will not be interrupted by the changeover to the new commissioning set-up?

As I said earlier, the work of the all-party parliamentary group has been outstanding in focusing attention on the service. At a meeting earlier this month, Teresa Moss, director of the National Specialised Commissioning Team, outlined ground-breaking steps towards a national neuromuscular services plan, which is a hugely welcome development for people affected by muscle disease across the country. As she said:

“I am pleased to share the good news that a national working group has been set up, with representatives from each of the SCGs across England as neuromuscular services will be a priority in next year’s work plan for the ten Specialised Commissioning Groups and the National Specialised Commissioning Team.

This is the first time that a coherent, national approach has been taken with regard to the planning and coordination of specialist neuromuscular services and I look forward to working with the Muscular Dystrophy Campaign, clinicians, commissioners and people living with muscle disease across England to take this important work forward”.

In the light of that, will the Minister outline how the Department of Health will publicise the details relating to the national neuromuscular services plan to the relevant health professionals throughout the service and, most particularly, how it will publicise details to people who are affected by muscle disease?

Finally, the Muscular Dystrophy Campaign has serious reservations regarding the impact of the proposed move to GP commissioning for non-specialised primary and secondary care for the 60,000 children and adults in England with muscular dystrophy and related neuromuscular conditions. Will the Minister clarify how specialist services commissioned by the NHS Commissioning Board and more generic services commissioned by GP consortia will link together?

My Lords, I should like to outline some issues around the treatment, care and quality of life of those with motor neurone disease, and then give an example of how the NHS in the south-west is dealing with Duchenne muscular dystrophy. I will conclude by gathering together points for my noble friend to consider in the context of research, NICE and commissioning these services in the new NHS.

Motor neurone disease is a disease of low prevalence but high need and very high cost. MND is a progressive neurodegenerative disease that attacks the upper and lower motor neurones. Their degeneration leads to weakness and wasting of muscles, causing increasing loss of mobility in the limbs and difficulties with speech, swallowing and breathing.

Perhaps I may tell the Committee about Patrick, an artist who was diagnosed in 2008 with MND. Patrick is determined to live a life that is as full as possible with his wife Kathy and three young children. He said:

“I have found out first hand what MND does to individuals and their families. I am gutted that I won’t get to see my children grow up. It’s like watching a great film and not being able to see the end. I want to help stop this. I want to get better care for me and my fellow sufferers and I want a cure. To do this we need to raise awareness and get more money for research. I will not get to see my daughter go to school and want to do anything I can to stop that happening to others”.

A salutary tale.

The rapid progression and wide range of symptoms mean that people with MND have complex and demanding care and support requirements. Someone with motor neurone disease may need as many as 18 health and social care professionals providing care at any one time—a complex care pathway and one that will differ from patient to patient. In the UK, the MND Association estimates that good care costs around £200,000 per person per year. However, where poor care results in crises and unplanned hospital admissions, this cost can easily double or even triple.

Fortunately, the numbers are low—around 5,000 in the UK, an incidence of around seven per 100,000. Here, I echo the call of my noble friend Lady Thomas: there is currently no national guidance for MND, and the MND Association is calling for the National Institute for Health and Clinical Excellence to produce a clinical guideline and a quality standard.

My noble friend Lady Thomas has spoken with personal experience of muscular dystrophy. In 2007 in the south-west of England, which is where I live and where 5,000 children and adults are living with muscular dystrophy, on average a young man with Duchenne would die at the age of 18—and that, compared with the average in the north-east of 30 years, was unacceptable. It was thanks to an effective campaign run by members of the public—families affected by this condition and parliamentarians—ably assisted by Muscular Dystrophy Campaign, that a south-west muscular dystrophy clinical network was set up. This was wonderful news for the families affected: it meant that journeys to Oxford or Oswestry for treatment—from Penzance, Cornwall or wherever— would be a thing of the past. This managed clinical network, set up by the south-west commissioning group, is making a huge impact across the peninsula, from Truro to Bristol to Exeter and Salisbury, providing three consultants, three and a half specialist physiotherapists, care advisers, a psychologist and extra support. It is seriously good news and costs PCTs in the region less than £9 per patient per month.

By setting up this service, its importance was recognised by the strategic health authority. Both motor neurone disease and muscular dystrophy Duchenne services will need expert commissioning. Smaller GP commissioning consortia will see very few of these patients from year to year. Motor neurone disease does not even figure on NICE’s radar. I would be grateful if the Minister could shed some light on how the proposed NHS Commissioning Board will deal with the commissioning of these services after NHS reorganisation. Would he also indicate the willingness of the Government to include motor neurone disease in NICE guidelines and indicate what levels of research support, and from where it might come, will be given to these organisations that work so hard for this small but important group of patients?

Sitting suspended for a Division in the House.

My Lords, there is nothing more powerful than the voice of a patient who has had long experience of a particular condition. Therefore, we should be very grateful to the noble Baroness, Lady Thomas, for introducing the topic of this important debate—which, as she said, affects at least 60,000 people with muscular dystrophy—and for the expression of her desire for a national neuromuscular plan, which I am sure would be beneficial.

I should like to limit my remarks to the one aspect that I know something about—chronic pain—and how pain management services can help the many who suffer from neuromuscular problems. I am grateful to the noble Baroness for encouraging me to speak on that aspect.

I have experienced chronic pain for nearly 40 years. Much more important is that, as we know, 8 million people in this country suffer from chronic pain, take up 4.5 million appointments with doctors and cost the National Health Service about £70 million. I was interested to read a report written by Dr Jensen two or three years ago along with some of his medical colleagues. It was the product of examining the effect of pain on neuromuscular disorder, which affects a number of people, particularly those with special types of muscular dystrophy.

Dr Jenson concluded that there is no effective or consistent treatment of pain for those people. There is no easy access or tailor-made service for people who suffer from pain, and there should be. That fits very strongly with the recommendations of the previous Chief Medical Officer, Sir Liam Donaldson, who recommended that there should be rapid and easy access to pain clinics so that early assessment can be given. What interested me in the report was that those suffering from neuromuscular disorder mentioned no fewer than 25 current different kinds of pain treatment. I should like to spend a minute or two examining some common factors between neuromuscular services and pain management services.

The first thing that strikes me is that both need multidisciplinary care. For example, we all need GP advice on medical aspects. Many people need psychotherapy because, for example, stress exacerbates pain. We need physiotherapy. We need hydrotherapy. I am particularly pleased to support the words of the noble Baroness, Lady Thomas, in suggesting that there should be more intensive research into the value of hydrotherapy. I accept that these pools must be very expensive to run. I have seen several of them and used a number myself. One run by the West Sussex Primary Care Trust in Bognor had integrated musculoskeletal, rheumatology and pain management services. I have seen how important hydrotherapy is to the treatment of all these people.

However, I am sad to have learnt this week that a hospital in Leicester has lost its hydrotherapy pool. I assume that that is because of cost pressures. As part of the overall research that I hope will be done, it is important to find out how hydropools can be shared among several specialist services in order to make best use of very limited resources. I know that that may be difficult but, if we want to keep them going and introduce new ones, it may be important.

I am also interested in how multidisciplinary services can be shared in other areas. For the sake of argument, I do not know the extent to which physiotherapists, in whose field there is so much specialism now, cannot handle the combination of pain management for muscular dystrophy pain and osteoporosis. However, it is important to look at where these multidisciplinary services can be shared. As a layman, I would say that there is too much compartmentalisation in the health service, even now.

Then there is the question of local lotteries, with varying standards of services. The National Pain Audit, which is now taking place, is looking at best practice in various parts of the country. That is the best way of trying to establish a national minimum standard throughout the country. I hope that the same will happen for neuromuscular services and that best practice can be examined.

That leads me naturally to the National Institute for Health and Clinical Excellence because NICE issued guidelines on the early management of persistent low back pain, which I strongly welcome. However, it needs guidelines, as the noble Baroness and other noble Lords have said, for quality care in neuromuscular conditions across the country. I hope that NICE will introduce those.

We should be aware also of the importance of preventive early intervention in the both the areas that we are talking about. The noble Baroness and other speakers referred to hospital admissions for muscular dystrophy which could have been avoided. The same applies to pain in people who, for example, are trying to hold down jobs. Preventive work can do a lot to keep people in their jobs or to enable them to return to their jobs early. Dame Carol Black’s report of 2007 on the health of Britain’s working-age population contains a lot of important recommendations.

We shall be debating GP commissioning consortia a great deal. We must be aware that doctors will have to grapple with many priorities in the commissioning and delivery of a large number of specialised services. They will need to be equipped with information and training as to what action is needed to best help patients with specialised problems and the multidisciplinary assistance available. That will be of the highest possible priority when we come to debate the Bill.

What matters at the end of the day is finding ways, with the help of the medical tools available to us, to enable those who suffer to manage their own problems as best they can to give them hope and help them to improve the quality of their life.

My Lords, I thank the noble Baroness, Lady Thomas, for instigating this vital debate and confess to an embarrassingly limited knowledge of neuromuscular diseases compared with those who have spoken already. However, because of my experience with rheumatoid arthritis, I hope that your Lordships will allow this patient with creaky joints a brief contribution on the attitude and practice of PCTs and GPs in providing appropriate specialist physiotherapy.

The NICE guidelines, where available, are a very good illustration of how one can help a patient with a life-limiting illness with an holistic service. The guidance for those with MS is as comprehensive as the guidance for those with rheumatoid arthritis, with which I am obviously more familiar, but there needs to be more for other neuromuscular diseases as a matter of urgency. As the noble Baroness, Lady Jolly, commented earlier, this is becoming the theme of this debate.

Page 19 of the MS guidance states that,

“a specialist neurological rehabilitation team ... should include specialist doctors, nurses, physiotherapists, occupational therapists, speech and language therapists, clinical psychologists and social workers”.

The theory of this is fine, but having talked to friends at our Tai Chi for arthritis class in Watford, which includes those with MS, I know that the reality can be patchy. With budget pressures on PCTs at the moment, it becomes very easy to dilute that support for patients.

For example, I have heard that at the end of last year my own PCT, West Hertfordshire, was considering creating its own “first line” of physiotherapy for patients not already referred to the hospital. At a practical level, this would mean that physios at the hospital would not be needed and would be sitting around with empty appointments lists. Much more worryingly, patients would be seeing a general physiotherapist who did not have the specialist training needed for neuromuscular diseases or diseases such as RA, when they needed to be seen by specialists right from the start.

This early specialist intervention is vital. In my own case, I see a physiotherapist, a hand specialist in OT and an orthortist, all of whom are there to ensure that I keep as much mobility and flexibility as possible and avoid serious joint deformity. Members may see me doing peculiar hand exercises at odd times. It is not semaphore; I need to keep my fingers and wrists moving before they completely stiffen up. Patients who do not get access to this specialist physio and OT support tend to lose mobility earlier and are more likely to give up working sooner than their colleagues who are getting that help. For those with neuromuscular conditions, maintaining the tone of muscles is also vital. It is vital for their independence. Frankly, it is vital also for the cost to the country of supporting them.

I gather that there was an outcry at the proposal from my PCT for a “first line” general physiotherapist and it was quietly dropped. However, I remain concerned that, in the current tight financial world, money becomes the order of the day, making it easy to curtail these services. I was also interested in the comments of the noble Lord, Lord Luce, about limited access to pain clinics. They are absolutely vital. In my own PCT, referrals take many months—often more than a year—which is hopeless if you are in severe pain and need support.

I also have concerns about the ability of GPs, with the pressures on their time, to plug patients into the specialist services. The NICE guidance for MS runs to 218 pages, with the one for patients and the public a mere 64 pages. Hard-pressed GPs, who may see very few patients with these diseases, cannot keep all the different details of NICE guidance in their heads, and new patients often do not know to what they are entitled. It is a Donald Rumsfeld situation: you do not know what you do not know. However, being fairly brazen, I asked my GP for help with my support early on, and she and I read through the guidance together and mapped out a plan. She said that, until I asked her, she had not been aware of the entitlement to the full range of physiotherapy support. I do not blame her for that at all. There is no way that a GP can know all there is to know about every bit of NICE guidance. I add in parentheses that the NICE guidance is seriously impressive and, if we use it as a standard, that will be fantastic. I return to the point that I made earlier—the receipt of this support by patients is very patchy.

I also know from talking to other RA and MS patients in my area that they had no idea at all that they were entitled to specialist physiotherapy services, and, more worryingly, nor did their GPs. I suspect that the same is true for those with neuromuscular diseases. Therefore, I ask: how much more difficult is it for those with more rare diseases to access the services to which they are entitled where there are not even NICE guidelines?

I welcome the proposals for a national neuromuscular services plan, but I ask the Minister to ensure that a simple handy guide is made available to GPs for them to use when a patient is first diagnosed to make sure that the patient gets access to physiotherapy support as early as possible. In that way, we can move to one consistent standard of service and improve the outcome for patients.

My Lords, the noble Baroness, Lady Thomas of Winchester, has rightly been raising these issues in the House since her welcome arrival here, and I have lent her my support whenever I have been able to do so.

The Muscular Dystrophy Campaign website asks all parliamentarians to take an interest in what the future holds for people with neuromuscular disorders, so this debate is very appropriate. Over the past few years, we have had the Walton report, led by the noble Lord, Lord Walton of Detchant, and the all-party parliamentary group. We have also had the Thomas report in the Welsh Assembly, so named after Ray Thomas, a tireless campaigner in Wales whose sons both had Becker muscular dystrophy, and the Mackie report in the Scottish Parliament. It was very wise to cover all three nations.

The three reports that have been produced, together with their recommendations, provide a focal point for the continued battle to ensure that action is taken to address the significant gaps in the provision of specialist neuromuscular care and to implement service improvements. I take this opportunity to congratulate the Muscular Dystrophy Campaign on its tireless and very effective work in raising the profile of the different and severe orders and also on the fact that it points without fail to the challenges, and sometimes the hardships, suffered by the families of people with these disorders. I shall not go into detail about the different types of muscular dystrophy, as the noble Baroness, Lady Thomas, has already done that, save to say that 1,000 children and adults out of every million people in the population are affected by muscle-wasting neuromuscular diseases in England. These disorders cause progressive muscle wasting and weakness, and they often result in premature death and lifelong disability. They often start in childhood or young adult life. As we know, the diseases are sometimes genetic and sometimes they are acquired.

Perhaps I may say how much I welcome the national programme of work for neuromuscular services that has been announced. The 10 regional NHS specialised commissioning groups, or SCGs, and the national specialised commissioning team met earlier this year and agreed a national programme of work around neuromuscular services for the year ahead and that the outputs of that work will be used to support a national approach to commissioning specialised neuromuscular services. Their 10-point plan is absolutely admirable, and I should like to highlight some of the things that are in it. They are: to write a service specification for specialist neuromuscular services; to carry out an audit of unplanned emergency admissions for patients with neuromuscular conditions; to clarify the current arrangements across England for access to genetic testing in order to obtain a clearer understanding of what genetic testing is being undertaken; to understand the current workforce of community physiotherapists and key community-based staff to identify what skill development is required; to create a service directory for each neuromuscular service, which would mean that healthcare professionals such as GPs would have access to a database containing standardised information; to understand the current arrangements for access to specialist equipment and to map that across the country to find gaps to understand the current arrangements for access to non-invasive ventilation; to make sure that neuromuscular patients have their specific needs for end-of-life care and that the national end-of-life work programme has considered the specific needs of patients with neuromuscular disease; to support the development of neuromuscular networks when they are appropriate; and to collate and review the various SCG reviews of neuromuscular services.

I thought that it was worth listing those points. I am sure that the noble Earl is going to go into more detail about them, but I thought that it was significant that after a meeting with the Muscular Dystrophy Campaign the Minister said in a letter to the noble Lord, Lord Walton of Detchant, that there are,

“weaknesses in commissioning, which is behind the patchiness and problems accessing vital services for those living with these dreadful conditions”.

That is exactly right.

Given that we know that comprehensive neuromuscular services should be designated within the specialist services national definition set, an audit of current services should be undertaken and the Department of Health should work with the emerging British Myology Society, mentioned by my noble friend Lady Wilkins, in approving a standard diagnosis and care for neuromuscular conditions. Is it possible that this progress will be able to be maintained under the current circumstances, both in the short, medium and long term? My question, echoed by virtually every the noble Lord who has spoken today, is: how will the specialist services weather the transition in the short term, when strategic health authorities and PCTs are disappearing and the GP consortia are being created? Indeed, how will we ensure that GP consortia will be able to recognise and commission for these rare diseases, picking up what commissioning has produced at a national level? Will the national commissioning use the 10-point plan? How will services such as hydrotherapy be delivered? The Minister will remember that I asked this question when we discussed this in the Chamber some months ago with the noble Baroness. This is an expensive but very effective therapy. Furthermore, what research are the Government supporting? How are they investing in research? Would the research be able to look at things such as the effectiveness of hydrotherapy and the pain management mentioned by the noble Lord, Lord Luce? I echo the point about NICE guidelines and look forward to hearing the Minister’s reply.

My Lords, I am grateful to my noble friend Lady Thomas for raising extremely important issues and to other noble Lords who have contributed with such knowledge to the debate today. I join my noble friend in paying tribute to the Muscular Dystrophy Campaign, which has been such a powerful advocate for those affected by these lifelong and life-limiting conditions, and to the All-Party Parliamentary Group for Muscular Dystrophy, which has done so much to keep these important matters on the agenda. Although he is not in his place this afternoon, I cannot let the opportunity pass to remark that the noble Lord, Lord Walton of Detchant, is not only an active member of the all-party group but one of the founders of the Muscular Dystrophy Campaign in 1959. That really is a testament to both his commitment and his stamina.

The subject of the debate is, “What is the Government’s assessment of specialist neuromuscular services?”. For large parts of the country, I am afraid that the answer is clearly “not good enough”, and perhaps “poor” in some parts. We know that there are historic weaknesses, which noble Lords have drawn attention to during today’s debate. The urgency for change is all the greater because these failures have a massive impact on the lives of people with these conditions. There are around 5,500 emergency bed days a year for people with neuromuscular conditions, with all that that entails for them and their families.

The Health and Social Care Bill is clear that highly specialised services, as set out in the Specialised Services National Definitions Set, will in future be commissioned by the NHS Commissioning Board. This presents a real opportunity to streamline decision-making, funding, planning and commissioning of all specialised services, and to achieve greater consistency by doing it once through the Commissioning Board, rather than 10 times locally. I know that the all-party group received a progress report from staff in the specialised commissioning group on 9 March. I also understand that the all-party group and the Muscular Dystrophy Campaign liked what they heard about the excellent progress already made by the existing regional specialised commissioning groups and about how the national group’s work plan will prioritise neuromuscular disease in 2011-12.

The work plan will focus on the key issues for people with neuromuscular disease from service specifications to emergency admissions, and from access to services and workforce models to specialist equipment and non-invasive ventilation. Many of the subjects raised by noble Lords, such as hydrotherapy and physiotherapy and so on, will be embraced in that exercise. However, I think we need more. We need a high degree of integration across the care pathway to deliver more person-centred approaches to planning specialised services. People with conditions such as muscular dystrophy need more than just highly-specialised tertiary care; they need, and have every right to expect, the same community-based services that so many others enjoy. The ongoing care that is so important for supporting quality of life and keeping people out of hospital includes hydrotherapy and wheelchair services; speech and language therapy and respiratory support; and help with swallowing. These services need to be commissioned locally by those close to patients and their families. This is currently a job for primary care trusts, not the specialised commissioning teams. My noble friend Lady Thomas raised doubts, echoed by the noble Baronesses, Lady Wilkins and Lady Thornton, about the emphasis that GP consortia may place on these services. I absolutely accept that better co-ordination and better integration between commissioning teams and a more person-centred approach to planning across the whole care pathway rather than individual bits of it are all essential. Clearly, integrated planning between GP consortia and the NHS Commissioning Board will be vital, just as joint working between PCTs and specialised commissioning groups is today.

The best answer that I can give on this is to refer to the strength and accountability mechanisms that we plan to put in place. They include the role of health and well-being boards at local authority level; the joint strategic needs assessment and joint health and well-being strategies, which will inform and guide local commissioning decisions; the overarching commissioning outcomes framework, by which consortia will be held to account; the place of the patient experience within that framework; the transparency of consortia performance; and the role of HealthWatch, which will act as the local voice of patients and the public and which will be in prime position to feed in grassroots opinion and experience to local planning, not least through its membership of the health and well-being boards. Once again, the points raised by the noble Baroness, Lady Brinton, on access to physiotherapy services and the noble Lord, Lord Luce, on hydrotherapy pools are things which, I have no doubt, will come into the compass of the health and well-being boards.

A consistent message which I have heard and which my noble friend reiterated today is that clear guidelines from NICE to cover muscular dystrophy, home ventilation and respiratory support would improve matters immeasurably. I hope that noble Lords will understand that it is not for me to direct NICE—its strength lies in its independence from government and I am not going to compromise that—but the new system will see quality standards commissioned from NICE by the NHS Commissioning Board. It will want to have quality standards for those topics that will help it to meet its outcome goals. Because of the focus on outcomes, a new approach for topic selection is being developed, overseen by the National Quality Board, which will allow stakeholders to comment and suggest topics. NICE welcomes that engagement from voluntary and patient groups, not only in the strategic sense but also on matters of detail.

I have already paid tribute to the Muscular Dystrophy Campaign for its achievements and to the all-party group. I am afraid that I must break some bad news: their work is not yet done. The NHS is changing—there is a great deal of work to be done to make it more responsive to patients and their families, and it cannot do this alone. GP consortia will need advice and guidance as they take the reins; NICE is already talking with the neurological leadership group on how it can develop stronger clinical advice; and the National Quality Board is working on a broad library of quality standards for NHS care. These are opportunities for the Muscular Dystrophy Campaign and others to feed in their accumulated knowledge and expertise, either directly or through the Neurological Leadership Alliance.

My noble friend Lady Jolly and the noble Baroness, Lady Thornton, asked about research. The Medical Research Council is, of course, independent of government. We have ensured that its budget for the period of the comprehensive spending review remains intact; its resource expenditure can be maintained in real terms. However, it remains the case that the selection of projects for MRC research funding is determined through peer review.

The noble Baroness, Lady Wilkins, asked about the sub-national structures of the NHS Commissioning Board and how the capacity and capability of services will be sustained during the transition. I fear that much of this falls into the category of work in progress. It is definitely not only on the radar of the department but is the subject of active work as I speak. A priority during the transition period will be to ensure that key capacity and capability are sustained through to April 2013 in order to support delivery. As the noble Baroness may know, the Government are proposing a managed consolidation of PCT capacity in order to create transition clusters. These will be administrative mergers similar to those that have already taken place in London and the north-east.

My noble friend Lady Thomas asked whether NICE should conduct a detailed review of its guidance, particularly as it relates to Duchenne muscular dystrophy. I spoke to the noble Lord, Lord Walton, about this the other day and encouraged him to feed in this view to NICE directly. I well understand why the request has been made.

My noble friend Lady Thomas also asked about quality standards. For the NHS, the new system will see quality standards commissioned from NICE by the NHS Commissioning Board. It will want to have quality standards for those topics that will help it to meet its national outcome goals. The remarks I have made about the process of feeding in to NICE apply equally there as well.

The noble Lord, Lord Luce, asked about training for GPs to deal with specialised services. As he knows, the Department of Health does not specify the content of training curricula; that is determined by regulatory requirements and the needs of the service. Comprehensive information to support clinical decision-making is included on NHS Evidence, the new single web-based portal hosted by NICE which provides all health and social care professionals with authoritative clinical and non-clinical evidence and best practice. NHS Evidence provides access to a range of information, including primary research literature, practical implementation tools, guidelines and policy documents. It is improving all the time and is widely used.

My noble friend Lady Brinton asked whether we would think about producing simple guidance for GPs to commission services for specialist conditions. I am happy to feed that suggestion into the NHS Commissioning Board, whose responsibility it will be.

The noble Baroness, Lady Wilkins, asked whether the department might publicise updates on the work plan to the NHS. I shall write to her about that.

I am grateful to my noble friend for the opportunity to discuss these important issues and I thank all noble Lords who have made contributions. We know there is much to do to improve the care of those with neuromuscular and other long-term conditions. At the same time, I am confident that by modernising the National Health Service we will improve the lives of patients with these conditions across the country.