Ten years of making a difference
Open Door - February 2007 page 6
Each year the MS Trust conference attracts more than 300 delegates from across the spectrum of MS services – nurses, therapists, social workers, neurologists. The following are some of the highlights from the three days of our tenth conference, which took place in November.
Professor Alan Thompson summarised the progress made over the last ten years and looked at what's next in the areas of underlying disease processes, diagnosis, treatment, and management. Whilst the currently available drug therapies have moved us forward significantly, there is still scope for further evolution in the management and treatment of MS.
Providing the patient voice, Candy Cooley spoke from the perspective of a senior health service manager who has MS. She challenged the assertion that people want more choice and emphasised the importance of listening to the needs of people with MS. She urged delegates to believe and trust people with MS to help them stay in control of their own lives and maintain their role in society.
The risk-benefit balance is becoming increasingly important with the introduction of new disease modifying treatments. Dr Mike Boggild proposed that the time is now ripe for a new approach to MS management. He argued that we are now in a position to identify those with 'poor prognosis' MS for whom the benefits of early treatment with aggressive anti-inflammatory drugs may outweigh risks of serious adverse effects associated with these therapies.
Recent research
Immediately before the conference, neurologists and MS specialist nurses from around the country met to discuss the implications of recent research completed at the National Hospital for Neurology and Neurosurgery and funded by the MS Trust. This showed that intravenous steroids can be used to treat relapses as safely, effectively and at a lower cost at home than in hospital. This work was part of a major reassessment of the relapse service offered by the hospital. Bernie Porter, the MS nurse consultant in the National Hospital team, made the point that modernising and developing services is not an option but a necessity if health professionals are to provide good services. Specialist nurses have a pivotal role to play in MS management but they must collect the evidence for their effectiveness. At the National Hospital they now have an electronic 'patient experience tracker' that allows people with MS to give their views on the service they receive and these comments are used to guide service change.
Dr Eli Silber looked at emerging treatment options. He was emphatic about the lack of evidence for both stem cells and goat serum but very positive about some of the new drugs on the horizon, particularly fingolimod (FTY 720). A phase III study has recently started recruiting people with relapsing/remitting MS. He closed the conference by stressing that people with MS deserve access to drug therapies and good services and that health professionals need to work as a team to deliver what they require.
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