The UK MS Register team attended the worlds largest conference about Multiple Sclerosis earlier this month in Boston. We attended talks and lectures and met with many of our current partner Neurologists and future collaborators.
All of these international Neurologists and Charities coming together in one place leads to great opportunities. One of which is the MS Society teaming up with other MS Charities across the world to fund 22 projects aimed at developing successful treatments for people with progressive MS. More than £17 million has been allocated for this new alliance and research.
The UK MS Register is not, as it may sound, a count of all those who have MS in the UK, but a unique ground-breaking study designed to increase our knowledge of living with MS in the UK. The answers to the questionnaires on the website are compiled and researched by the team at Swansea University and other researchers across the UK – all aiming to understand MS and the effects it has on people’s lives.
There are nearly 11,000 people who have signed up so far, however, only 57 people have answered “I am British Asian (Indian / Pakistani / Bangladeshi)” in the ethnicity questionnaire. That works out to be just over 0.5% of the participants who are answering questions on the UK MS Register website. We need more representation from all ethnic groups!
The Ethnicity Question is based on the current standard NHS ethnicity monitoring questionnaire and does not allow for the greatest detail, but the number of people who have answered this question from an Asian background is low!
The Register currently has over 10% of the estimated 100,000 people with MS in the UK on board with us and we can see that the data that we are getting from the questionnaires is representative of the UK MS Population (for example the number of males and females with MS or the proportions of MS type), so please help us help get Asians’ with MS represented as accurately as possible. Data from the Register works towards influencing policy and improving care of MS in the UK.
Some of the reasons that are considered barriers to the Register in general, are thought to be limited IT access or skills and language barriers, but we are trying to encourage family members of friends to help their loved ones with MS to go online and answer our questionnaires.
So in order for your voice to be heard, please tell your friends, relatives and your local groups to encourage anyone with MS, to please log onto www.ukmsregister.org and start helping to make sense of MS.
You can call Katie from the UK MS Register Team on 01792 606 354 or email the team email@example.com if you need any help or have any questions.
A letter has been published today (14th August 2014) in various newspapers from Norman Baker MP, the Drugs Minister to Jeremy Hunt, Health Secretary. He suggests that drug laws should be relaxed to allow people with MS and other health conditions to use cannabis for medicinal purposes. Sativex – which is made from cannabis and is licensed to treat muscle spasms and stiffness in people with MS is not currently available on the NHS. There are concerns that people are being forced to break the law to secure the only substance that can help to relieve their condition.
The UK MS Register is going to the 5th MS Research day in London this weekend. The event is hosted by UCL Partners and is an opportunity for people with multiple sclerosis (MS), family, friends and carers to get an update on current advice and guidance for self-management, details of what is happening in research and meet MS Health Care Providers in an informal setting.
We are attending MS Life 2014 and have some new goodies to give away! If you are going to be there too, then come along to our stand, log on to show us that you are an ‘Active user’ and receive a free thank you gift.
It’s also a good chance to meet the team and ask any questions about the Register or even suggest some ideas. As part of the Emotional Well-being lecture, Associate Professor Kerina Jones, lead researcher from the MS Register is also talking about Register data on anxiety and depression levels in people with MS. (Saturday 26th April,14:00-15:00 in MS Life theatre, MS Life 2014)
Don’t worry if you can’t make it, we will be having some postal give-aways over the next few months – keep an eye on your emails.
These pages will keep you informed with all the things that the MS Register discovers from YOUR answers. You’ll find links to the research we have carried out, information about us, links to other useful sites and will also keep you up to date with what is happening with the UK MS Register Project.