Standards Committee, 26 Oct 2004

Meeting date: Tuesday, October 26, 2004

Official Report 208KB pdf

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Cross-party Group

We have before us an application to establish a Scottish Parliament cross-party group on lupus. The paperwork complies with the rules for cross-party groups. Frances Curran, who is to be the convener of the group, is here. Do you wish to add anything to the application, Frances?

I will be quick; there are a lot of cross-party groups and the committee must have gone through this procedure many times.

My first point is about awareness of lupus as a disease. There are many cross-party groups on health issues, but not much is known about lupus, even though it is very common. That is why I want to raise the issue here. Lupus is more common than leukaemia, multiple sclerosis and muscular dystrophy put together. It is reckoned than one in 800 people in the population suffers from it. With the cross-party group, we want to raise awareness. The disease is common, but because it affects various things—kidneys, heart, lungs, skin and the central nervous system—people are often treated for those other things. Arriving at a diagnosis can take a long time. It would save the national health service a lot of money if general practitioners knew about the diagnosis. We also want to raise awareness among statutory bodies such as the Department for Work and Pensions and among employers and the public.

I was pleasantly surprised to see the interest when we held our first meeting. Then, when a meeting was held to set up the group, seven consultants turned up from hospitals across the country. That is an indication of the importance of raising the issue and increasing awareness of it. There is also a group at the Westminster Parliament, so I hope that the committee will look favourably on our application.

I open up the meeting to members who may wish to ask Frances Curran questions.

I do not have any questions but I will say that, for the reasons that Frances Curran has outlined, I think that the group is welcome. Little is known about lupus and it has no political profile—it has no profile even in the NHS. Despite the fact that we sometimes wrestle with the proliferation of cross-party groups on health issues, it is good that this group has been formed. It is very worth while.

I am the convener of the cross-party group on ME and we often think that ME sufferers have a desperately low profile. However, even compared with ME, lupus struggles in that department, so I welcome the formation of the group.

Do you plan to work with any of the other cross-party groups on matters of common interest, Frances? Lupus is often regarded as an auto-immune disease. As far as I am aware, there is a group on arthritis, and there may be matters of common interest with groups on bone diseases.

We discussed those issues at our first meeting and Dr Zoma, who is an expert in the field, spoke about the arthritis group. The impetus exists to get the lupus group going; there are enough interested parties. Some groups have taken a long time to get set up. Ideally, there would be an alliance, with people in different groups working together.

With all the health groups, issues arise over a register of patients and a set of policies about care. We can all learn from one another. The health professionals, too, are taking part in that learning process. So the simple answer to your question is, yes, we intend to work with other groups. It would be a good idea to have some joint meetings—to share information on the best way of raising awareness. We also have to consider how to organise care within the NHS.

Are members content that we should approve the group?

Members indicated agreement.

We will write to you about that formally, Frances.

Thank you—that is really helpful. My sister suffers from lupus, so she will be delighted.

Thank you very much for coming today.