A REPORT published this week by the MS Trust has revealed that as few as 12% of people with multiple sclerosis (MS) are given the information they need at the time of diagnosis, leaving the majority of people struggling to make sense of their condition.

Around 100,000 people in the UK have MS, with over 5,000 people diagnosed every year — that's around 100 a week.

Most people are in their 20s and 30s when diagnosed and, on top of the expected anxieties associated with a diagnosis of MS, this lack of information is provoking increased stress and a good deal less insight and understanding of their condition. Unsurprisingly, the report found that a staggering 72% of people with MS would have been less stressed if they had been given the right information when diagnosed.

This unnecessary additional worry and fear also has a devastating impact on family and friends who are left in the dark with little understanding of the condition, not knowing where to turn for reliable and trusted information and feeling unable to fully support their loved one at a difficult time.

Trish Deykin, who lives in West Devon, was diagnosed with MS nine years ago. Despite her condition, she is now a successful triathlete.

She said: 'After my diagnosis in 2005, I felt very lost.

'I knew very little about MS and all I could think about was being in a wheelchair.

'I wasn't supplied with any booklets or phone numbers when I was diagnosed.

'I think if I had it would have done me the world of good knowing that there was someone to talk to who understood how I might be feeling.'

People affected by MS are forced to seek out their own answers and the majority naturally turn to the internet. Here, they are often confronted by misleading information which is of little relevance to their own circumstances. Just under two-thirds of people surveyed in the report believed that, if they had access to accurate information, they could have avoided misleading information which left them feeling scared and despondent about their future.

The MS Trust has responded by producing a new resource specifically to help people who have recently been diagnosed. The Making Sense of MS resource has been developed in partnership with people with MS and the clinicians who work with them, to provide positive and practical introductory information at the point of diagnosis.

Prof Neil Scolding, Consultant Neurologist at Bristol NHS Trust, said: 'In a busy clinic it is often difficult to provide the right amount of information and some patients understandably find it hard to take in the information they are given when they are first diagnosed.

'This new resource is excellent — simple, clear and easy to read and understand. And it fits in a pocket! The fact that it allows people to access additional information that is right for them and at a time that suits them makes it extremely valuable. I will be encouraging colleagues to use this information, to help people newly diagnosed with MS through this difficult time.'

Sarah Joiner, vice chair of the MS Trust, said: 'I am thrilled with the new Making Sense of MS resource. It means that people like me get to ask the questions that matter most to them and can take all the time they want to understand the answers.'

To find out more and to support the MS Trust's campaign Making Sense of MS, please visit http://www.mstrust.org.uk/sense">www.mstrust.org.uk/sense or show your support by following @MSTrust and using the hashtag #MSsense.