News - November 2007
Open Door - November 2007 page 3
- National Survey of MS Services: January 2008
- Satnav loos
- Tysabri approved in Scotland
- Talk on complementary therapies available online
- People with secondary progressive MS sought for clinical trial
National Survey of MS Services: January 2008
Do you have MS?
Do you live in England or Wales?
Have you had any contact with the NHS about your MS during 2007?
If yes, we need your help!
In partnership with the Royal College of Physicians we are working on a survey of MS services across England and Wales. This is a follow-on from the survey in January 2006 and will again measure how well current MS services deliver against the NICE 2003 Guidelines.
We need at least 1000 people with MS to give 10 minutes of their time to complete the questionnaire, preferably on-line.
Satnav loos
The growth of satellite navigation devices for cars over recent years has led to the development of companies offering extra features. Points of interest (poi) files are available free on a number of websites allowing users to download specific types of information onto their satnav systems.
Gonmad (www.gonmad.co.uk/satnav_poi.php) includes information on disabled parking spaces, Shopmobility centres and locked public toilets that can be used by people with a RADAR key.
Poi Download UK (www.poidownload.co.uk) includes links to companies providing a range of goods including mobility equipment.
Neither website is exhaustive and they rely on users updating the site with new locations or correcting errors.
Tysabri approved in Scotland
In September the Scottish Medicines Consortium (SMC) approved the use of Tysabri (natalizumab) for the treatment of rapidly evolving severe relapsing/remitting MS on the NHS in Scotland.
The approval follows the similar decision taken by NICE (National Institute for Health and Clinical Excellence), which approved Tysabri for NHS use in England and Wales this August.
Order or download the MS Trust's Tysabri factsheet
Talk on complementary therapies available online
A question and answer session on complementary and alternative therapies and MS will be available on the MS Trust website from mid December.
The film features Dr Allen Bowling discussing a wide range of issues to do with complementary treatments and dietary approaches to MS.
Dr Bowling has published numerous papers and books on complementary therapies and is noted for taking a non-judgemental, evidence-based approach to an area that can excite bold claims both for and against non-conventional treatments.
People with secondary progressive MS sought for clinical trial
Dr Jeremy Chataway - Consultant Neurologist Imperial College Healthcare NHS Trust & National Hospital for Neurology and Neurosurgery
Simvastatin is widely used as a cholesterollowering drug, but evidence suggests that it may also be useful in MS. Firstly, it seems to reduce the number areas of inflammation on the MRI scans of people with early MS, and may have that effect in secondary progressive MS; secondly it might improve the immune system in MS; finally it might be neuroprotective. These are a lot of 'mights' so we need to have further proof – hence this trial. The study will look at the MRI brain scans of people taking simvastatin and those not taking it and we will also look at how people are doing in terms of their day to day living.
The researchers need 140 people to take part for two years each, having three MRI scans during that time.
To take part, you need to be:
- between 18-65 years old
- have worsening secondary progressive MS (NOT primary progressive)
- at best able to walk 500 metres; at worst 20 metres (frame allowed)
- not on disease-modifying drugs (eg beta interferon)
- be able to travel to the MRI centres in Sussex or Bucks.
If you are interested, call: 020 8383 0675 or email: mstc@imperial.ac.uk for a patient information sheet.
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