Access to effective help and support
Open Door - August 2007 page 2
Ensuring that people with MS get access to the right help and advice at the right time continues to be hit and miss in various parts of the country. To this end we have put a new map on our website to help people identify neurologists with expertise in all aspects of MS management including drug therapy. We hope this data will also provide GPs and other members of the primary care team with a framework for effective referrals.
If you are in the process of being diagnosed, or no longer in touch with a neurologist but are having problems and need to be referred, this data should provide invaluable support.
Map of MS specialist neurologists in the UK
Encouraged by the response to this new data, we are now looking to broaden the information we can offer so watch our website for future initiatives.
Tysabri (natalizumab) recommended by NICE
After strong representations from the MS Trust, the National Institute for Health and Clinical Excellence (NICE) has decided that Tysabri is cost effective for use on the NHS for people with rapidly evolving, severe relapsing/remitting MS. This is an excellent decision and will mean that Tysabri will be available for people with this form of the condition.
MS Trust Chief Executive Chris Jones said "We are delighted that people with this severe form of MS now have access to treatment. NICE's decision will send out a positive message to everyone with MS that the disease is finally being taken seriously.
Due to the rapid disease progression of this particularly aggressive form of MS it is imperative that patients get this treatment without further delay and we hope that neurologists and commissioners will react swiftly to this decision."
NICE's decision applies to England and Wales, but we hope people in Scotland and Northern Ireland will also be given access to Tysabri. The usage of Tysabri will now sit alongside the current disease modifying drug therapies. Ongoing evidence shows that the beta interferons and glatiramer acetate are bringing real benefit to people with MS.
MS management has changed greatly since the launch of the Risk-sharing Scheme in 2002, and not just through access to the drug therapies. We have more nurses, therapists, and consultants who now specialise in MS. Despite the financial pressures on the NHS, the MS Trust, aligned to some very committed health professionals, will continue to fight for improved services for people with MS. A new Prime Minister, who has personal reasons for understanding the value of health, and a new Secretary of State for Health lead us to cautious optimism. If you have any experiences you would like to share with us do please contact us.
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