That was the headline on the very first issue of our newsletter Open Door. Simon, who joined our information team in 2000, reports on how our service has developed in response to changing needs over the years.
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.
Chris Jones and Jill Holt, the two founders of the Trust had experienced the negative effects of poor information and found this wholly inadequate. 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.
The response was very positive. Requests for the pack quickly moved to requests for information about issues that it didn’t cover and the need for a dedicated information service became clear.
In 1997 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. As this issue of Open Door goes out, we are welcoming our latest recruits who take the size of the Information Team to seven.
Change and evolution
The number of calls we receive has grown greatly. In 1998 there were 288, with less than half 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 majority of our enquiries have always been by telephone but other methods reflect changes in the way people communicate. In 2001, almost one in five of our questions came by letter. By 2013 this had fallen to fewer than one in a hundred. Initially post was replaced by email but in the last few years we have seen a rise in questions generated by our Facebook page.
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.
The nature of enquiries has changed as people have had more access to general information. In 1997, when the MS Trust website first went live, opportunities to use the internet were more limited and the range of information more restricted. In 2014, online access is much more widespread – both on computers and increasingly on mobile devices. Often enquirers are calling to go into more specific areas less well covered online.
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 with MS.
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