(12 years, 9 months ago)
Lords ChamberMy Lords, I quake to disagree with my noble friends Lord Walton and Lady Finlay about Amendment 96 but I do so as someone who has been the chief executive of a very large health commissioning organisation. It is utterly crucial that rare conditions are considered individually and that the level at which they are commissioned is decided by the national Commissioning Board coming together with the clinical senates and the clinicians involved in the area. They are best placed to decide on the best level of commissioning based on epidemiology and public health expertise. In fact, this amendment would achieve the very opposite of what the noble Baroness, Lady Finlay, wanted: to highlight some of these very important rare conditions which we do not want to forget. It is not helpful, however, to have rare conditions identified in this form in the Bill. We must leave it to the clinicians to make a judgment about how they are commissioned in groups. That will protect patients better, in my view, than any statutory guidance of this kind. I hope she will reconsider and not press this amendment.
The noble Baroness is not only disagreeing with the noble Baroness, Lady Finlay, and the noble Lord, Lord Walton, but disagreeing with all the organisations associated with these particular rare diseases. They think that the way forward is in the amendment of the noble Baroness, Lady Finlay.
I will respond briefly to that. We all have tremendous sympathy with the fact that very many rare conditions are not currently commissioned to the standard that we would wish. It is also true, by the way, that many ordinary conditions are not commissioned to the standard of service across health and social care which we think would be best for the patients. That is undoubtedly true, but we would not necessarily fix that by having a special focus on the way we say where it is going to be commissioned. What we need are specialists in each of those rare conditions’ groups to be consulted, to ask patients and their relatives about how they should be commissioned, and some professional advice about the epidemiology of it.
Noble Lords should remember that the national Commissioning Board has the ability in this Bill to use, for example, the good offices of their local offices that will regionally be able to ensure that clinical commissioning groups can come together to commission properly for rare conditions. That is already happening around the country, and that is more likely to be a way forward than this particular statutory amendment. I am not saying that those rare conditions do not need some focus and better commissioning: they certainly do.