Nottinghamshire 2015 Survey of people with Multiple Sclerosis
Summary – 106 respondents of which:-
Age at: Survey time Time of diagnosis Time stopped work due to MS
All Women (75%) Men (25%) Women Men
20s 0% 23% 15% 8% 0%
30s 6% 27% 39% 10% 20%
40s 16% 29% 31% 30% 30%
50s 28% 19% 15% 48% 45%
60s 30% 2% 0% 4% 5%
70s 11% 0% 0%
80s 2% 0% 0%
Not stated 7% 0% 0%
At the time of the survey 28% of the respondents were single, 24% lived alone and 21% were in employment or business. The types of MS from which the respondents said they suffered were:-
Relapsing remitting 31%
Primary progressive 15%
Secondary progressive 45%
Benign 3%
Not known 6%
One of many examples of how they could help more:-
Carers: Be more thoughtful
Nurses: More regular appointments, home and out of hours visits
GPs: Improve their knowledge of MS, its treatment and the aids available
MS Society: More information & emotional support for families of people with MS
Neurologists: Don’t assume all symptoms relate to MS as other ailments get overlooked
Gen. Public: More consideration for disabled people – particularly on public transport
Government: Welfare benefits – better assessment and payment procedures
Follow up action
A more detailed account of the results of the survey was given in a poster display and presentation at a well-attended, and NSG at the QMC sponsored, Living with MS Research and Information Day at the East Midlands Conference Centre on 17 October 2015. The PowerPoint presentation (copy is available on request) gave examples of the ways in which each of the individuals and organisations mentioned above could do more to help people with MS.
Details of the survey results were supplied to the MS Society for any action which it considered appropriate.
Lack of human resources prevented the NSG from undertaking a proposed major project aimed at improving the lives, education, training and employment prospects of people with MS.
Acknowledgements
The survey, which was financed by a Big Lottery grant, was undertaken on behalf of the NSG by Graham White with the assistance of Megi Clarke and the cooperation of Doug Fletcher and his fellow members of the Nottingham & District Branch of the Multiple Sclerosis Society. The NSG thanks them, the people who completed the survey forms and anyone else who helped with the project.
Graham White
NSG @ QMC Trustee
