Health and Social Care Bill

Baroness Jolly Excerpts

Monday 27th February 2012 Lords Chamber

[Baroness Morgan of Drefelin]

My Lords, I rise briefly to support Amendment 50A in the name of the noble Baroness, Lady Finlay, and the noble Lord, Lord Patel, and Amendment 63A in the name of the noble Baroness, Lady Finlay. We need to be clear that the role of NICE in our health system is extremely important. It plays a pivotal role in helping the system to understand innovation, and it is extremely important in promoting fairness. At a time of very tight resources, it would be good to have the role of NICE clearly set out in the Bill. I know that the noble Baroness, Lady Finlay, talked about the reputation of NICE and the role that it plays in facilitating audit and many other things. For me, however, it is about making sure that we have fairness across the NHS in England, and NICE is key in ensuring that that happens for patients.

I want to comment briefly on Amendment 63A. Others have talked about the concerns of the Neurological Alliance. I speak as the honorary president of Cancer52, which represents people affected by rare cancers. The majority of cancer deaths in this country occur because of rare cancers. We know that if a person is diagnosed with a rare cancer, they have often had to really fight through the system, visiting GPs many more times than those with the more common cancers which people call the “big four”. Oesophageal, pancreatic and ovarian cancer, for example, are conditions of which GPs have very little experience. There is a great deal to be done in the NHS to improve outcomes for people diagnosed with what are often called less common or rarer cancers, but which are a group of conditions which account for more than 50 per cent of all cancer deaths. The noble Baroness, Lady Finlay, is right to say that we should be encouraging commissioners to ensure that, where rare conditions are concerned, there is collaboration and knowledge and experience sharing so that they do the right things for patients, regardless of how common their condition may be.

[Baroness Jolly]

My Lords, I had not intended to speak because everything had been said. However, the noble Lord, Lord Walton of Detchant, made a point that I think is worth picking up on. I declare an interest as chairman of the Specialised Healthcare Alliance, which works with people with rare and complex conditions. These conditions are commissioned by the NHS Commissioning Board, while the conditions referred to by the noble Baroness, Lady Finlay, in Amendment 63A are intended to be commissioned by CCGs. Clearly, people are really anxious about these commissioning arrangements. They are based on geography; they are relatively small in number, but not tiny; they are geographically sparse; and very often GPs will not actually see these conditions very frequently.

The noble Lord, Lord Walton, asked whether any thought had been given to sweeping these conditions in with the rare and complex conditions, and to have them commissioned by the NHS board. I am not suggesting whether this is a good or a bad thing, but I think that those with these conditions and the organisations that represent them might be glad to engage in a dialogue on this to see whether it is the appropriate way forward. There is certainly a lot of anxiety about what is currently happening. If my noble friend would give us some indication of whether that could be looked at, that might alleviate some concern.

[Lord Winston]

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.