Multiple Sclerosis Trust

The MS Trust's mission is to make a real difference for people with MS through the provision of information and professional education, by funding practical research and by campaigning for the improvement of MS services. We work to the highest possible standards and actively seek opportunities to work with other organisations to provide real benefit for people with MS.
Oct 31, 2013

Explaining multiple sclerosis

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:

  • other members of the MS Trust Information Team
  • people with MS
  • health professionals who work with people with MS

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.

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Jul 18, 2013

The world of MS is ever changing

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.

Links:

Jul 18, 2013

GEMSS the story so far

MS Trust research was commended in July at the Royal College of Nursing as an example of good practice for demonstrating the impact of public services. Here we look back on the first year of our GEMSS project, and look forward to some exciting developments ahead.

At the MS Trust we believe that one of the best ways to help people with MS is to support their specialist nurses. Since 1996 we’ve been leading the way in campaigning for and supporting their work. We funded the only research project which shows that, as well as being vital to people with MS, MS specialist nurses also save money for the NHS by keeping people out of hospital. We estimate that a single MS specialist nurse, with an average caseload of around 250 patients, can save the NHS around £65,000 a year.

However, in recent years we’ve had to step up our work. As health budgets grow tighter, specialist MS nurses are under increasing pressure to demonstrate the impact of their work or risk having their funding removed. Some nurses have been asked to return to ward work, while some positions have become vacant (due to leave or retirement) and not been filled.

This is why we’ve been working to help MS nurses demonstrate the impact of their work, so they can make the strongest case possible to managers and commissioners about the importance of their role.

Over the past year we’ve been piloting a project called GEMSS: Generating Evidence in Multiple Sclerosis Services. We recruited MS teams from Northumbria, Dorset, Dudley and Sheffield and worked with them to develop tools to enable them to collect and analyse data on their service, so that they can demonstrate the difference their work makes to people with MS, and present this information to managers most effectively.

The pilot was a huge success, and has already been instrumental in keeping at least one nurse in post. “Without data our future is insecure,” said one nurse who took part. “But once the data is there it’s there and it’s quite easy to update. It helps us present a really powerful case to managers. Quite often they didn’t realise the service they were getting.”

This year we’re going to produce a companion piece to our report on the value of MS nurses called Defining the Value of Specialist Allied Health Professionals in MS. We will be showing why the knowledge of specialist therapists, such as MS occupational therapists, is crucial. And we plan to to roll out the GEMSS project further so that more MS services, and more types of MS specialist, have access to the tools we’ve helped to develop.

Thank you for helping to fund this work, which is already making a difference to MS services.

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