Health and Social Care Bill

My Lords, I hope that in summing up the Minister will address the general issue of genetic disease. The noble Lord, Lord Walton, referred to one specific single gene defect but there are some 6,000 single gene defects and they are often very complex. Most of them are fatal diseases and many of them affect children. A few sufferers of single gene defects live to a young age and some occasionally live into middle age. However, one problem that we already find in the health service is that provision for the care, treatment and diagnosis of these patients and for the counselling of their families is often very deficient, depending very much on whether funding is available. An example is the work that has been going on in pre-implantation genetic diagnosis, which can prevent a child who might die from one of these diseases being born through the selection of a suitable embryo. Of course, this is not a cheap procedure but in terms of financial efficiency for the health service it is very much less expensive than the complex care that might be involved for a child with, for example, advanced male-type muscular dystrophy. Hitherto there has been a huge difficulty in getting these services through individual PCTs because they think in the short term and are on a budget from year to year. Therefore, collaboration seems extremely important not only in relation to these rare cancers, which of course are immensely important, but for a great number of diseases which are extremely distressing. I am sure that the Minister will fully understand and be greatly sympathetic to the fact that the families involved are immensely distressed by these diseases. They are often very puzzled that they may be carrying one of these gene defects and they find it very difficult to get answers to what are quite complex problems. There really does need to be proper provision for them through collaboration with other authorities.