Living with MS can generate lots of questions.
Being diagnosed generates the first batch.
The list can be very long. Getting your head around being diagnosed can take some time and be a bit of an emotional rollercoaster. More questions…
Perhaps, later on, symptoms kick in that you haven’t experienced before. Even more questions…
Perhaps you’ve got a review coming up with your MS health professionals. It’s a good opportunity to ask questions but…
Thanks to donors like you, the MS Trust can help
We have information you can trust including a brand new suite of resources called Making Sense of MS for people who are newly diagnosed with MS.
We have an A to Z of MS on our website. This is a great way to begin understanding symptoms, exploring treatments options and living well with MS.
The MS Trust's Information Team is here to answer questions from anyone affected by MS on freephone 0800 032 3839 or email firstname.lastname@example.org.
The MS Trust is on social media including Facebook and Twitter.
Thank you for supporting the MS Trust and helping us to provide these vital information services for people living with MS.
Search for multiple sclerosis on the internet and you’ll find a wide range of web pages, chatrooms and social media sites offering a mix of news, opinion and hearsay. How can you know if you’ve found information you can trust?
The Information Standard is a programme run by NHS England for all organisations producing health and care information for the public. The MS Trust has been part of the scheme since 2011 and we’re proud to say that this year we were once again accredited.
In March a team from the Information Standard came to our offices and took a rigorous look at our books, factsheets and website to make sure everything we produce is clear, accurate, balanced, evidence based and up to date. They checked that:
This means when you read our books or look on our website and see the Information Standard mark you know that our information can be trusted. We’re currently working on several new MS information resources that will be available in print and online later in the year.
Making Sense of MS
We know that being diagnosed with MS can be a particularly challenging experience. Even now, when there is so much information available, finding what’s right for you at the right time can still be difficult. To meet this challenge we’re working on a new resource designed to give people who’ve just been diagnosed the basic information about the condition and help them to get more on the topics that are important to them.
Secondary progressive MS
The change from relapsing remitting to secondary progressive MS can also be a difficult time, yet it’s a relatively neglected area. That’s why we’re working on a resource that will help you understand exactly what secondary progression means, how management of this type of MS may change and some of the research looking for new treatments.
Disease modifying treatments
Several new drugs for relapsing remitting MS have become available in recent years. While this has expanded choice, balancing the benefits and risks of treatments and deciding on the most suitable approach for you is becoming more complicated. We’re working to update our book and web pages with the latest information so that you can make informed decisions about your options.
It's only thanks to valued donors like you that we are able to provide high quality free information to help everyone affected by MS. Thank you very much for your support.
"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.
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