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.
Do disease modifying drugs affect life expectancy?
16 April 2019
This study looked at whether taking one of the beta interferon disease modifying drugs extended life expectancy.
How do families affected by MS manage health information?
20 March 2019
This research explores how couples and families affected by MS seek, share and withhold health information.
New UK guidelines for pregnancy in multiple sclerosis
07 February 2019
New guidelines for pregnancy care in multiple sclerosis, drawn up by a panel of UK experts including the MS Trust, have been published.
MS Trust launches 'Move it For MS' exercise campaign for MS Awareness Week
25 April 2019
This MS Awareness Week, we are calling on people with MS to pop on their pumps and introduce a little activity into their daily routine. Staying active doesn’t need to mean running marathons or going to the gym, it’s about doing it at your own level, at your own pace. Doing it YOUR way.
Don’t judge a book by its cover – Becky’s books help the MS Trust
24 April 2019
Our supporter Becky is raising money for the MS Trust with the sale of her beautiful handmade notebooks.
EMA recommends temporary restriction on use of Lemtrada
12 April 2019
The European Medicines Agency has recommended a temporary restriction on people who should start treatment with Lemtrada while a review of side effects is carried out.