Campaigning
Nicola Russell, Director of Services, MS Trust
Open Door - May 2008 page 3
This article is being written in advance of MS Awareness. By the time you read it we hope we will be able to look back and see that progress was made with regard to one of our campaigning objectives, namely raising the profile of MS, thereby improving MS services.
Multiple sclerosis is not uncommon. There is a growing view that the often stated number of 85,000 people with MS in the UK is now a significant under estimate. Most people know of someone with MS and yet the awareness of the variability of the condition, the major symptoms or the prognosis of MS are not well known or understood.
The MS Trust believes that this lack of understanding leads to poor service provision and that is why we are currently undertaking a structured approach to the key decision makers in the new Strategic Health Authorities (SHA) across England. We have been speaking to the directors of commissioning, and the lead people for long-term conditions who are now planning the health services in the new geography of the NHS. These visits have demonstrated the lack of knowledge and the very low profile MS has in comparison to other long-term conditions such as chronic obstructive pulmonary disease, asthma, or diabetes. This low profile, low level of budget allocation, and the low level of expert clinicians is unacceptable and must be changed to deliver improved services. Encouragingly we have found that the SHAs are aware of their failings, are willing to admit low commitment to neurology and poor MS services, and are really interested in quality services, not just hitting targets. It is, however, less clear to see what their plans are to resolve the deficiencies, although, in some cases, we have been invited to work with them to develop plans for the future.
SHA activities are only one way the MS Trust is trying to improve the situation. We have an ongoing programme of educational courses that we deliver to health professionals working with people with MS. The theory is that if health professionals understand the issues, they will become local champions and use their not inconsiderable influence to improve the situation. We have already seen evidence of success with this strategy in some parts of the country where individual health professionals have worked hard to develop MS services and these centres are now good examples to others. At a meeting in March for all the MS specialist nurses in the UK organised by the MS Trust, such services were discussed and experience shared across the UK.
The final weapon in our effort to improve services is accurate information. In this area the MS Trust is working with the Royal College of Physicians to regularly monitor the implementation of the NICE MS clinical management guidelines. In addition we are taking an active part in the Neurological Alliance campaign to develop accurate data on neurological conditions.
Only time will tell how effective our campaigns are being. Whilst there is no doubt services are better, especially in some areas, there is still a long way to go.
Can we help with services in your area?
Recently we were asked to help to gain funding for an individual who needed a baclofen pump fitted. Despite all the health professionals in the area being agreed that this was the required clinical decision the PCT would not agree funding.
We were asked if the MS Trust could help and are pleased to report that a letter to the Chief Executive brought about a rapid solution and the pump is being fitted!
We cannot promise success every time but it is evident that as an organisation representing people with MS the MS Trust can sometimes help the health professionals achieve the best outcome for the individual. If you ever need our support just email info@mstrust.org.uk. We like a challenge!
Join the Open Door mailing list to receive your own copy through the post (UK addresses only) or by email.
