Health and Social Care Bill

My Lords, this is a disparate group of amendments. I shall speak in particular to Amendment 96, which has been so ably proposed by my noble friend Lady Finlay. I do not propose to redeploy the arguments that I expressed when a similar amendment was discussed recently. One thing that is beginning to emerge as the Bill continues its progress through your Lordships' House is that the size and, perhaps, quality of the clinical commissioning groups will be extraordinarily variable. Some will be large and contain a large number of GPs, and so on; therefore, with the secondary care individuals who will become members of the group and others, some will deploy a wide range of expertise. However, it is perfectly clear that in some parts of the country the clinical commissioning groups are going to be very much smaller. The range of issues in highly specialised services will be very limited and the smaller clinical commissioning groups will lack the knowledge and expertise to handle those areas well. For that reason, it is crucial that the national Commissioning Board should have the major responsibility for commissioning highly specialised services, in which I include not only the neurological services, about which I spoke in some detail last week, but cardiological services, cardiothoracic services and many other specialties. On Rare Disease Day, the point that my noble friend Lady Finlay made about rare diseases is very important. There are thousands of rare diseases affecting a very small number of patients throughout the UK. The Rare Disease UK consortium, chaired by Dr Alastair Kent, the former chairman of the Genetic Interest Group, is deeply concerned, as is the Neurological Alliance, about the mechanism by which these diseases will be given attention in this legislation and proper understanding, control and attention by the national Commissioning Board. As my noble friend said, there are several thousand rare diseases, some affecting very small numbers and some larger numbers. I spoke in detail last week about muscular dystrophy. As an example, last week I was asked by a former medical colleague in Newcastle to see, with him, a patient—not as a consultation but to look at the problem posed by a condition called haemolytic uraemic syndrome. This is due to a genetically determined disorder of the complement system. It is a disease that affects the kidneys, is steadily progressive and is ultimately fatal. However, recent research has identified and produced a licensed medicine which is effective and which in the patient whom I met, with her husband, has proved to be virtually life-saving. The problem is that there are only 200 patients in the UK with this disease and the cost of the medicine for that patient is £250,000 a year. At the moment, it is paid for by the drug company, which is carrying out trials. That is one example but there is a huge number of genetically determined rare diseases for which new drugs are coming on stream. There are many cases where the causal, abnormal or missing gene product has been identified and where, slowly but surely, drugs which are beginning to have a beneficial effect on these progressive, disabling or ultimately fatal diseases are beginning to emerge. These are called orphan or ultra-orphan drugs. Whatever happens in the future with the National Health Service, the possibility—the probability—of having a special mechanism to deal with the needs of people with these rare diseases, as well as the needs relating to the orphan and ultra-orphan drugs, is going to be a massive problem. It is crucial that there is a very clear indication in the Bill that rare diseases deserve special consideration. For that reason, I warmly support Amendment 96, which has been proposed so ably by my noble friend Lady Finlay.