"A positive approach to multiple sclerosis" …that was the headline on the very first issue of our newsletter Open Door. As the MS Trust marks its 21st year we’re looking back at how our information service has developed in response to changing needs.
When the MS Trust was set up (initially as the MS Research Trust) in 1993, information was sparse. People were frequently told “You’ve got MS, learn to live with it”. What did exist was often too simplistic or too technical and more likely to frighten than to inform.
One of the first projects of the new charity was an information pack to provide balanced, realistic answers to the questions people had and to raise awareness of what was available to help people manage their symptoms and live their lives with MS.
In 1998 the MS Trust appointed its first Information Officer. Originally her role was mainly to support health professionals, particularly the first of the MS nurses who were starting to be appointed around the country. However, calls from people with MS quickly grew and the team began to expand.
The number of calls we receive has grown greatly. In 2001 there were 459 enquiries, half of which were from people affected by MS. In 2013 we received 2,714, with more than 80 per cent coming from people with MS or their family or friends.
The variety of questions reflects the wide range of issues that can affect someone living with MS – whether it’s from someone newly diagnosed and unsure where to turn next, or someone asking about treatments to manage their symptoms, to something more unusual such as whether having a tattoo might affect MS. Even when a topic appears several times, the response is rarely exactly the same as we try to match information to the caller’s particular needs and situation.
21 years on, the need for reliable, evidence-based information remains as strong as ever. People increasingly expect information to be available to help them make informed decisions about how they live their lives with MS. Whether through our website, our range of publications or through the personal enquiry service, the MS Trust continues to offer help in finding the information people need to live their lives.
Thank you very much for helping us to provide this vital service.
Because multiple sclerosis is such a diverse condition, and no two people experience exactly the same symptoms, it can sometimes be tricky to explain to friends, families or colleagues just what it is, and why you might be having certain problems. To help make this a bit easier we’ve just published a new edition of our popular book, MS Explained, which you can order free or read online as a PDF
Like all our publications, MS Explained is provided free to those who need it, thanks to the generous support of donors like you. It costs us about £5 to research, write, produce and post a single book to someone with MS.
To mark the publication of the new edition we spoke to one of the book’s authors, Alison from our Information Team.
What does MS Explained cover?
It gives a basic introduction to the central nervous system, the immune system and what MS can do to the body. It also looks at the possible causes of MS and highlights research and areas where advances might be made in the future.
How popular is MS Explained?
It’s our third most popular book. Since 2004 we have sent out over 40,000 copies.
How long have you been working on this update?
I’ve been working on this update for the last eight months. The first part of the process is checking the literature to see what has dated in the old edition. Then a first draft is put together with the updated information. This goes out to review to three groups of people:
Once we’ve got their comments we consider them, and decide whether to incorporate them into a second draft, which is then internally reviewed. Finally a third draft is completed, which is then sent to our designer for layout and printing.
What are the major changes for the new edition?
The most noticeable changes are to the ‘Future research’ section which has been updated and expanded. Also, as a result of feedback, we’ve changed the order of the contents. We also wanted to build on the glossary and explain more of the terms used in the book that people living with MS may hear regularly.
What’s the lifespan of this edition?
This edition will be reviewed in three years time. The MS Trust is a certified holder of the Information Standard. This means we’ve undergone an assessment to show that the information we produce is clear, accurate, impartial, evidence-based and up to date. To maintain our certification we have to review our publications at least every three years.
The world of MS is ever changing. There are several new important disease-modifying drugs in the pipeline; the economic situation has left more people worried about jobs and benefits; NHS changes are offering challenges to the services people with MS depend on; wider use of the internet and social networking means people with MS want to access information in different ways.
What doesn’t change, however, is the need of people with MS for reliable, accurate information from a source they can trust, and this is what the MS Trust continues to offer, to more people every year.
Despite being small, the MS Trust has come to be recognised as the definitive source of health information for people living with MS and demand for our services continues to grow. At the end of 2006, for instance, we were in contact with 25,900 people in the MS community; by the end of 2012 this had risen to 44,000. In 2006 we received 135 detailed enquiries a month, needing research and a tailored personal response; in 2012 it was 226 per month – an increase of 67%.
We anticipate no falling-off in this increased pressure of demand. More than 50 people are diagnosed with MS in the UK every week. Recent research we commissioned among newly-diagnosed people demonstrated that the proliferation of unmediated information on the internet has made it even more of a struggle for them to find practical, unbiased information.
The MS Trust provides independent, accurate information which helps people with MS to understand more about their condition and about how they can maintain as active, normal and independent a lifestyle as possible. Thank you very much for supporting this essential work.
During November 2012, we asked callers to our enquiry service to complete a survey about the support they received from the MS Trust. The 37 responses we received were on the whole very positive and showed that people really valued the information and support they were given.
Some of the common reasons for calling included help with treatment decisions, access to health services, support with work related issues, and people wanting to understand more about MS and how it might affect them or their loved ones.
On average, 83% of the people we surveyed said that contact with our enquiry service increased their understanding and knowledge of MS and 88% said it increased their confidence in dealing with the issue they called about.
“It helped us in deciding whether my husband should take the drug treatment being offered (he decided he would) and I intend to follow your suggestions about where to get first aid training to help my husband when he chokes on food.” Anon
94% of the people who responded to our survey said that they would contact the MS Trust again if they needed information about MS in the future.
“You actually got to speak to a real person who seemed to have the time to talk through the things I needed to discuss. They were prepared to go away and research the information I needed and send it to me.” Anon
“It built my confidence to now tell people I have MS.” Anon
It costs £200 a day to keep our freephone enquiry service running. Thank you for donating towards this project and helping us to make a difference in the lives of people affected by multiple sclerosis.
Our latest research project looked at the information needs of those who are newly diagnosed with MS and those who support them. Appropriate information around the time of diagnosis is important as many people know little or nothing about MS when they, or a loved one, are diagnosed. Alternatively, they may know someone who has MS and assume that everyone's experience is the same.
This research provides information about what is most important to people around the time of diagnosis and will allow us to develop better resources for people newly diagnosed with MS in the future. It also highlights to health professionals the information preferences and needs of people with MS and should allow them to work more effectively.
We are only able to continue providing information to people with MS thanks to the support of generous donors like you. Thank you for helping to fund our free helpline and we look forward to updating you again soon.
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