Health: Neuromuscular Services

Baroness Thomas of Winchester Excerpts

Wednesday 30th March 2011 Grand Committee

Asked By

[Baroness Thomas of Winchester]

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

[Baroness Thomas of Winchester]

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.

Healthcare

Baroness Thomas of Winchester Excerpts

Thursday 28th October 2010 Lords Chamber

[Baroness Thomas of Winchester]

My Lords, with so little time for niceties or an introduction, I shall concentrate my remarks on the management of those with muscular dystrophy and therefore declare my usual interest. I know that my noble friend the Minister has in the past attended the all-party group here in the House, which has endeared him to all those working in this particular field. I wonder whether he would be prepared to meet the group again soon in his new role to discuss some of the issues that I shall mention today and some which there is no time to mention.

Some 60,000 children and adults in England are affected by one of more than 60 different types of muscular dystrophy. These are rare or very rare conditions that weaken and waste muscles. They can cause lifelong disability and, in some cases, premature death. There are currently no cures or treatment and, without multidisciplinary care, most patients and their families experience a further reduction in the quality of life and, for some conditions, shortened life expectancy.

The Muscular Dystrophy Campaign, in its responses to the White Paper consultations, has welcomed the proposed NHS commissioning board for specialised services and believes it to be a necessary step towards a national neuromuscular service for those with these neglected conditions. We urge the Government to make sure that the board is well enough resourced to ensure that all who need care can access it wherever they live.

As for GP commissioning, it is clear that GPs simply do not have the knowledge, experience or patient numbers to commission services for these extremely complex and rare multisystem disorders, some of which affect just a handful of patients in the country. In addition, these are costly low-volume services, so regional commissioning is essential to share the cost among a larger population base. Currently, many people living with these conditions are denied both essential and specialised care, such as respiratory care, and non-specialised care, such as physiotherapy or hydrotherapy. It all depends where they live. The all-party group revealed in the Walton report published two years ago that this postcode lottery has had devastating consequences. Young men with Duchenne MD die on average 10 years earlier in some parts of the country than in others simply due to a lack of specialist care.

Not only is that inconsistent access to care needlessly damaging lives and families, but it is costing the health service a huge amount of unnecessary money. It is estimated that the NHS last year spent a shocking £68 million in England on unplanned emergency hospital admissions. Clinical audit data have shown that such admissions could be greatly reduced through the provision of specialist multidisciplinary care.

Spreading knowledge of the conditions that I have mentioned would be greatly enhanced if there were a new National Institute for Health and Clinical Excellence quality standard for Duchenne muscular dystrophy based on the internationally agreed standards for care published by TREAT-NMD in the Lancet Neurology, a course of action that I hope the Minister will endorse.