Neuromuscular Care (North-West)

Emily Thornberry Excerpts

Wednesday 9th February 2011 Westminster Hall

[Emily Thornberry (Islington South and Finsbury) (Lab)]

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

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

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

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

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

[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?