I was diagnosed with multiple sclerosis (MS) in September 2014. I’d noticed problems with my walking and that I was getting tired much more quickly. In February I went to the GP and she immediately referred me to a neurologist. The neurologist sent me for an MRI scan and the results confirmed that I had MS.
I knew nothing at all about MS. The neurologist explained a bit about it. She told me to accept it, get on with my life, and not let it get in my way. But she didn’t give me any written information. She told me to try not to look on the internet. But I didn’t listen. I did look, and tried to work out what appeared nonsense and what appeared sensible.
And that was how I came across the MS Trust's website, and Making Sense of MS, their information for people newly diagnosed with MS. I was especially struck by the short video clips of people who’d recently been diagnosed discussing what it meant to them. It was just seeing ordinary people in their own homes rather than clinical environments.
They came across as reliable. The message was “Don’t worry overly. You have to understand where you are, and what you can do. But get on with life”. As a result I ordered a number of books from the MS Trust. The ones about telling your kids were really useful for our younger ones. We all understand things much better now.
In 2014, thanks to support from donors like you, our information team answered more enquiries than ever before, and produced resources tackling some of the trickiest MS issues.
In 1993 there was very little practical information to help people deal with MS. Today there is almost too much. Type “multiple sclerosis” into your phone, tablet or computer and you will find over 35 million web pages claiming to give you the answers.
At the MS Trust we pride ourselves on providing practical, evidence-based information, tailored to the needs of people living with MS. In 2014 we were once again accredited with the Information Standard kitemark, which lets people know that when they look at our website or pick up our books and factsheets, they’re reading MS resources they can trust.
We’ve always focused very much on providing information that can make a practical difference today, helping people living with MS make the choices that can help them live life to the full. In 2014 we published two new guides to dealing with MS bowel and bladder problems. These are very common in people with MS and are often simply treated. However, if they go untreated - because people are uncomfortable discussing them, or don’t connect them with their MS - they can have serious consequences.
We’ve seen how much people with MS, and their MS specialist nurses and therapists, value our information with a record-breaking year. In 2014 we sent out over 67,000 books, factsheets and DVDs – that’s up from almost 50,000 in 2013. 75 per cent of our publications are ordered by MS specialist health professionals. They know that they can rely on MS Trust resources to be clear, reliable and useful for the people with MS they care for.
Our website received over 3 million page views in 2014, while the number of visitors went up by almost 40 per cent.
Thank you for helping us continue to support people affected by MS.
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.
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