Neuromuscular Care (North-West)

John Pugh Excerpts

Wednesday 9th February 2011 Westminster Hall

[Graham Evans]

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.

[John Pugh (Southport) (LD)]

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?

[Graham Evans]

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.

[John Pugh]

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.

[Graham Evans]

Okay. I thank the hon. Gentleman.

--- Later in debate ---

[John Pugh (Southport) (LD)]

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?

--- Later in debate ---

[John Pugh]

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.

[Emily Thornberry]

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?