As we await the latest findings from NICE regarding Beta-interferon, a preliminary study of the clinical guidelines for Multiple Sclerosis has been started. This will be a document based upon the best evidence currently available that will provide guidance on the management of MS in GP surgeries and hospitals, covering the full range of care that should be routinely available from the NHS. As we all know, the people most likely to be affected by the NICE committee’s decision on Beta-interferon did not have any input into the original report. For this new report by NICE, the committee has learnt its lesson and indeed will take into account the views of people with MS and their carers to help develop the clinical guideline. Three focus groups are involved in this; one will be people with mild to moderate symptoms; one will consult a group with moderate to severe disability and a third will take into account the views of carers.

Linking with the MS Research Trust based in Letchworth, I was asked to help assemble the focus group for people with mild to moderate symptoms from the local MS community. We met last month at the Herts MS Therapy Centre and were asked to draw up a list of issues that the guideline developers should address when developing the clinical guidelines for MS. One issue that came up again and again was the need for an MS Nurse from time of diagnosis onwards, to help patients cope with and manage their symptoms, to help educate other health professionals in management of the disease and to co-ordinate care at times of relapse and through other therapies. The focus groups will be consulted again in a year’s time having been given feedback on some of the issues covered in an early draft of the clinical guideline, and changes and additions will be suggested as necessary. It is a small step, but at last the views of the MS community are being taken into account on something that will have a major effect upon how we are treated in the future.