Neuromuscular Care (North-West)
Debate between John Pugh and Lord Evans of Rainow(13 years, 9 months ago)
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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.