For 20 years the MS Trust has provided free, evidence-based information for anyone affected by MS – via our enquiry service, our printed publications, and, increasingly, our online and social media resources. We hope to help people understand more about their condition, consider their options and work effectively with their MS teams. Here we introduce some of the members of our award-winning team and some of the people they’ve helped.
Simon, Information Officer
Providing good, reliable information has always been at the heart of what the MS Trust does. Much has changed since we appointed our first information officer in 1997. But the need for a source of trustworthy, impartial information is as true today as it was in then.
In 1998 we received 288 enquiries, with the majority coming from health professionals asking about issues raised by the people they were seeing. In 2016 we answered over 3,000 enquiries for the first time, with more than 70% coming directly from people living with MS and another 20% from their family or friends.
Although many more people now have access to computers or digital devices, two thirds of our enquiries still come by telephone. Many callers have already looked for information online, but the ability to talk through issues is still very important. About one in five enquiries we receive is by email and recent years have seen an increase in the number of questions being posted via Facebook.
The range of questions we receive is vast. A call from someone who has just been diagnosed and who doesn’t know which way to turn may be followed by someone who has had MS for many years and is asking about treatment options for a specific symptom. Although our focus is on health information, MS can affect all parts of life and calls can cover work issues, benefits, driving and much more. People sometimes say that they worry that their question isn’t important enough or appropriate for the MS Trust. But whatever your concern, give us a call on 0800 032 3839 or email firstname.lastname@example.org and we’ll see how we can help.
Ali, Information Officer
In today’s internet-connected world we have a whole wealth of information at our fingertips, but accessing information you can trust isn’t always easy. At the MS Trust we pride ourselves on providing practical, evidence-based information, online and in print.
In 2016 we sent out over 50,000 free MS books, factsheets and DVDs, covering everything from disease modifying drugs to things you need to think about if you’re considering starting a family.
Meanwhile our website mstrust.org.uk continues to grow. It now has over 7,000 pages and last year received over 1 million visitors. People rely on our accessible, evidence-based information, but also our user-friendly guides to complicated subjects. MS Decisions, our tool for thinking about treatment options, has proved particularly popular, and has been highly commended by the British Medical Association.
Janice, Information Officer
There is a huge amount of research into MS being published every week. However much of it isn’t easily accessible or even understandable by people who aren’t part of the scientific community. At the MS Trust we believe that knowledge is power - the better you understand your MS, the better you can manage it. So we run a regular search for interesting and relevant research articles relating to multiple sclerosis using Medline, a specialised search engine for medical journals.
When we find research we think is particularly notable, we write an accessible summary, and include links to further reading on any issues it raises. This research update is published on our website at mstrust.org.uk/research-update. On this page you can also sign up for a free email, which will send the latest research direct to your inbox!
Helena, Engagement Officer
How we find the information we need is changing fast. Only ten years ago you might still have gone to your local library if you needed to look something up. Five years ago you might have turned to Google to search for details about an unfamiliar drug or symptom. These days we find that more and more people’s first port of call is social media, to find real people discussing the issues that matter to them.
At the MS Trust we know that we have to make our info available in the ways that suit people with MS. So today the MS Trust isn’t just a brilliant, extensive, evidence-based website. We also have a lively, regularly updated Facebook page (facebook.com/mstrustuk), a thriving Facebook community (facebook.com/groups/multiplesclerosistrust) and you can find us on Twitter, youtube and a whole range of other social media channels.
Every day we share the latest MS news and research, practical tips on managing symptoms, real-life MS stories and opportunities to get involved with our work. We also produce a regular MS Trust news video that rounds up all the latest developments in a three minute clip. Articles we post frequently generate a lively debate among the community, relating the latest news about an MS drug, therapy or symptom to their own experience - adding an authentic, real-life dimension to our evidence-based information.
Why I love the MS Trust
The MS Trust Facebook page has helped me a lot. It has everything you need to know about MS. It’s nice to know there is a place for me as I recently got dignosed with MS and I never knew there were online forums or blogs. I don’t feel so alone now I know there is a place i can look for the information I require. Larissa, London
A member of our team has MS and I phoned the MS Trust for advice and information and they were absolutely brilliant. They give fantastic advice and point you in the right direction. If you need support of any kind, don’t hesitate to pick up the phone. These people do incredible work. Now i know there is a place I can look for the information I require. Joanne, London
We contacted the MS Trust when my first neurologist told me I had MS and then told me the appointment was over, with no information on what I was supposed to do. The MS Trust were amazing and gave us so much information and help. I’m now with a specialist MS team after their advice and would highly recommend them. Thank you for everything. Claire, Salisbury
Can the MS Trust help me?
MS can affect you in all sorts of ways, and can have all manner of consequences. Whatever your question, no matter how big or small, the MS Trust is here to help. Our team of experts are here to listen and help you find the answer to the questions that matter to you.
Call us: 0800 032 38 39 (Monday to Friday, 9-5pm, excluding public holidays)
Email us: email@example.com.
And of course you can still write to us! Multiple Sclerosis Trust, Spirella Building, Bridge Road, Letchworth Garden City SG6 4ET