Free enquiry service for people with MS in the UK.

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:

• we have a defined and documented process for producing high quality information
• we use only current, relevant, balanced and trustworthy evidence sources
• we understand our users and we user-test our information
• we double-check our end products and clearly identify any conflicts of interest
• we take on board user feedback
• we review our products and processes on a planned and regular basis

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.

Links:

• View the full list of publications available from the MS Trust

"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.