Friday, 29 June 2018

Guest post: MS Perceptions: help us understand how we understand MS

It is actually surprising how little most people know about MS. 

This is important because people who know someone with MS usually want to offer help and support, but don’t know what to offer. 



Many would offer help if they understood better what was making life difficult for the person with MS, such as fatigue, brain fog, the drug regime, etc. Also many people don’t know anyone with MS, yet the general public’s opinion can count when decisions are made about NHS funding.

MS Perceptions are investigating how different groups perceive MS. By finding out how different groups perceive MS, we can help tailor communications more effectively. 

When we understand better how people with MS view their disease, we can write health education materials that are more accessible and give the right information to build on what is known and cover what is new to them. 

When we find out what people who know someone with MS know about MS, we can put together information for family members, friends and work colleagues that is more relevant and facilitates their supporting people with MS. 

When we have an idea about what the general public knows about MS, we can arrange information that will make them more confident about approaching people with MS and offering appropriate support. They will also be better
informed when questions of NHS and social care funding arise, because they will see what health and social care needs the disease creates.

MS Perceptions is being led by Dawn Langdon, Professor of Neuropsychology at Royal Holloway University of London. She does a lot of research on psychological aspects of MS, especially cognition. She is a Trustee of the MS Trust (www.mstrust.org.uk) and author of their online cognition tool for people with MS (www.stayingsmart.org).

Please contribute to this important project by completing our first survey

The survey takes 30 minutes to complete. The survey is collecting information from people with MS, people who know someone with MS and people who don’t know anyone with MS. There are questions about the disease itself, how it affects people’s lives and their employment.

The results of the survey will be summarised on this blog later in the year and published in a scientific journal. They will be made available to educational, health and voluntary sector organisations.

If you are a person with MS, or you care about someone with MS, and you would like to help Dawn Langdon’s research group some more, please contact her on d.langdon@rhul.ac.uk for further information. 

The survey is anonymous so you will need to email Dawn to get on the MS helper’s database. Find out more about Dawn’s work.



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