Earlier this year the MS Trust carried out new research into the effects of information on people’s experience of MS diagnosis. We surveyed 500 people living with MS and asked them whether they had been given information when they were diagnosed, and how this had affected their adjustment to living with MS.
We received a sobering response. Only 12 per cent of people who responded to our survey said they received all the information they needed when they were diagnosed.
93 per cent of respondents said that they had to carry out their own research after being diagnosed. Many people told us that they had to look for answers to their questions online, and the information they found was often misleading and not relevant to their circumstances. This had the effect of leaving many people scared and despondent about their future.
72 per cent of respondents told us that they believed that they would have been less stressed if they had access to good quality information when they were diagnosed.
At the MS Trust we believe that information is powerful. Over the last two years we’ve been working with people living with MS and MS specialist health professionals to develop a new resource to help people make sense of MS when they’ve just been diagnosed. Over the next couple of weeks we’ll be explaining more about why this information is needed, how we’ve developed and designed our new resource and sharing the experiences and tips of people living with MS. We’ll also be letting you know how you can get involved and help us reach more people with MS and help them find the right information at the time that’s right for them.