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.
Pain, fatigue, depression and anxiety common in first year after multiple sclerosis diagnosis
21/07/2022 - 00:00
Pain, fatigue, depression and anxiety are common in established MS; this study monitored the symptoms during the first year after diagnosis of MS.
Updated NICE multiple sclerosis guideline contains some good news and some bad news
22/06/2022 - 00:00
There are some positive points in the revised 2022 guideline but the MS Trust is disappointed that NICE has been unable to recommend Fampyra.
The ADAMS project
25/05/2022 - 00:00
Dr Benjamin Jacobs spoke to us about a new study on the genetics of MS in people from minority ethnic backgrounds which may eventually shed light on why MS can be more severe for Black and Asian people.
Government announce they will not purchase Covid-19 vaccine Evusheld
17/08/2022 - 00:00
The UK government have announced that they do not plan to purchase any of the Covid-19 drug Evusheld.
My accidental diagnosis led to a new career: Daniel's story
16/08/2022 - 00:00
After finding out that he had multiple sclerosis by accident, Daniel’s life changed entirely. He tells us about how the unexpected news led him to become a doctor.
From London to Scotland: an update on the cycling adventures of Lis
12/08/2022 - 00:00
A few months into her challenge, fundraiser, Lis van Lynden shares an update and some of the highlights from her 5,000 mile cycle around the coast of Great Britain.
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