Health and Social Care Bill

My Lords, it would be difficult to overstress the crucial importance of this issue, which has been a matter of grave concern to the specialist medical community. People with less common conditions often require specialist services for treatment unavailable through generic NHS support. At Question Time today, I posed a Question to the Minister about the report of the National Audit Committee which had demonstrated the serious inequalities of neurological services throughout the United Kingdom. People with neurological conditions rely not only on skilled neurologists but on a specialist multi-disciplinary team of nurses, physiotherapists, occupational therapists, speech and language therapists and others to maximise their independence and quality of life. The Bill proposes that these services be commissioned at a local level by Clinical Commissioning Groups which will be able to determine the size of the population for which they have responsibility and which, as matters stand, will have no duty to collaborate with other Clinical Commissioning Groups in the commissioning of services. Grave anxieties have been expressed by the Rare Disease Consortium and by the Neurological Alliance which is the only collective voice for more than 70 national and regional brain, spine and neuromuscular organisations working together to make life better for 8 million children, young people and adults in England with a neurological condition. My personal wish would be to ensure that the commissioning of highly specialised services and services for less common conditions was conducted by the national Commissioning Board and not delegated to local clinical groups. After all, many of those clinical commissioning groups will cover a relatively small population area, and a lack of specific monitoring of this issue by the NHS Commissioning Board could allow geographical disparities in service provision and outcome—disparities that already exist and are serious—to widen. At an earlier stage in the debates on the Bill, I mentioned my interest in research into muscular dystrophy and pointed out that when I started work in that field a boy with the most severe form of muscular dystrophy, Duchenne-type dystrophy, would have difficulty in walking in childhood, would be confined to a wheelchair, and would usually die at about 16 years of age from respiratory insufficiency. A recent major investigation by an All-Party Group studying facilities for the management of such patients throughout the UK demonstrated that in centres of excellence such as parts of London, Oxford, Newcastle and Oswestry boys with this disease are now living with supportive care and respiratory support into their 30s and even their 40s, and living much more productive lives. In some parts of the United Kingdom, such as the east of England and the south-west, we found that such boys were still dying in their teens. That is just one example. There are many other rare diseases where new developments in genomic medicine are resulting in the discovery of new forms of treatment. I well remember—I am talking about the role of general practitioners—two GPs telling me that they thought it was quite disgraceful that I was spending time and effort in raising money for research into and treatment of a rare disease such as muscular dystrophy, which after all, they said, was a fatal condition and the money could be much better spent on the management of common conditions. I am very concerned that some of the clinical commissioning groups would not take full account of the crucial needs of people with rare, crippling and progressive diseases. After all, I have often said that you cannot measure human suffering in purely numerical terms. It is a matter of great importance, and for that reason these amendments are crucial in order to make certain that rare diseases and uncommon conditions are fully accepted as being of great importance, and that the commissioning of services for them will be a vital part of the provisions in the Bill.