Health Bill [HL]

My Lords, this is an important amendment. The reason that I think it is important rests on my knowledge of specialised commissioning services across a large range of different activities in the NHS, not least in my specialty of neurology. I am at present serving on two inquiries being conducted by All-Party Groups. One is on Parkinson’s disease; the other is on muscular dystrophy. We have taken a great deal of evidence already on services for patients with Parkinsonism, and have found, not greatly to my surprise, that there is a remarkable unevenness of resources and facilities for patients in different parts of the country, in relation to their medical care and also to the availability of specialist nurses, specialist physiotherapists and specialists in language and speech therapy. In the case of muscular dystrophy and other neuromuscular diseases, the situation is substantially worse. My own research, many years ago, was based in Newcastle-upon-Tyne. I will give you a perfect example of what I am talking about. The most severe form of muscular dystrophy, the Duchenne type, affects young boys who have difficulty in walking and who, by the time that they are eight, nine or 10 years of age, are often confined to a wheelchair. When I started working in this field, many of them died in their early teens from complications such as heart failure or pneumonia. In the unit in Newcastle with which I am now very familiar, the range of services, including physiotherapy, treatment of contractures, prevention of deformities, respiratory care and specialised support for cardiac complications, has meant that the average age of death of boys in that unit, and indeed in other specialised units in Oxford, London and other parts of the country, is 31 or 32 years of age. I even know of one patient who is 41 years of age—admittedly on assisted respiration, but living a useful life. However, in certain parts of the country, and in one region in particular, a survey has shown that the average age of death of those patients is still 18 years of age. The standard of care is grossly uneven throughout the country. The principles set out in the NHS Constitution are outstandingly good, but it is crucial that those responsible for commissioning specialist services should be in a position to take account of the crucial differences that already exist in services in different parts of the country. For that reason, this is a very important amendment that I warmly support.