News
Open Door - February 2012 page 3
MS Trust conference
The MS Trust's Annual Conference took place in Warwickshire in November.
Professor Helen Tremlett
The conference is the largest event in the UK for health professionals working with people with MS and attracted over 300 nurses, therapists and allied health professionals. Running education events such as the conference is a vital part of the work of the MS Trust to improve services for people with MS.
The programme featured an array of high quality presentations, posters and seminars covering topics as diverse as cognition, palliative care, complex nutritional needs and dizziness. The conference also allowed people from all over the country to share thoughts, ideas and experiences that can help them improve the services they provide.
Speakers included Professor Helen Tremlett, from University of British Columbia Hospital, who presented an overview of a study that has followed people with MS since the 1980s and which provides valuable information about how the condition develops over time.
Dr Eli Silber
Dr Eli Silber of King's College Hospital in London looked at advances in potential therapies for relapsing MS, the need to balance clinical benefit with potential risks and where emerging drugs would fit in with current treatments. He also discussed the current lack of treatments for progressive MS.
Professor David Miller from the Institute of Neurology in London discussed the advances in diagnosing MS and how developments in MRI are producing more detailed scans, which may provide faster and more accurate diagnosis.
In the closing session, Sarah Joiner, patron of the MS Trust, gave an insightful account of her 30 years experience of living with MS, touching on the insensitivity of her diagnosis, the need for people to fight for what they need so they can stay in work and her admiration for the practical support and advice provided by MS nurses and therapists.
NICE appraisal of fingolimod
In December, NICE issued a second draft recommendation that fingolimod (Gilenya) should not be made available on the NHS.
Following consultation on the original draft recommendation, issued in August 2011, NICE had been working with Novartis, the manufacturer of fingolimod, to develop a patient access scheme that would make the drug more cost effective. Consultation on the second draft recommendation closed in January. NICE will be meeting again in February with a final decision expected in April. Watch the MS Trust website for news.
Fingolimod is licensed for people experiencing more than one relapse a year or for whom treatment with the existing disease modifying drugs has not been effective.
Clinical need not cost
Evidence has been appearing that some NHS bodies have restricted access to disease modifying drugs or switched treatment on cost grounds. To counter this, in December the Department of Health published a letter reminding NHS bodies of their continuing obligation under the Risk-sharing Scheme to provide treatment to eligible people with MS. Any decision to stop or alter treatment can only be based on clinical reasons, not on the cost of the treatments to the NHS.
The Risk-sharing Scheme was set up in 2002 to make the drugs - beta interferon (Avonex, Betaferon, Rebif) and glatiramer acetate (Copaxone) - available on the NHS to people who meet the prescribing criteria. The three disease modifying drugs licensed since 2002 - natalizumab (Tysabri), beta interferon 1b (Extavia) and fingolimod (Gilenya) - are not covered by the Scheme.
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Open Door articles are reproduced as published. They are not updated to take account of subsequent developments. Use appropriate caution in acting on the information in any article.