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.