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What you told us in our Service User Survey

With your help, we were able to better understand how we make a difference - and you also gave us some ideas for how to improve and do more!

Earlier in the year, we completed our most recent Service User Survey. In it we asked those of you who have used our Helpline, read our booklets or online information, and those of you who have joined our online support groups or attended an event, to share your experiences and to give us feedback on the work we do.

It is really important to us to hear what you have to say – it helps us to improve and to develop our services so that we can support more people, in more ways.

We are really grateful to everyone who completed our survey, and wanted to share with you some of what we learned!

What we are doing that makes a difference

96% of those that had used our Helpline service said they would recommend it to others.

78% said our Helpline team was able to support them in a way that their healthcare team was not.

Some of you told us that this was because there no time constraints:

‘They had more time to answer questions, they had more time to discuss the emotional impact as well as answer practical questions.’

‘They were available. I really wanted to talk through my worries and have these concerns understood and the helpline team was able to help me with this’

Others said they found emotional support through speaking to our Helpline.

‘They know what they’re talking about, they don’t tell you that your symptoms don’t exist, they provide practical and emotional support in dealing with flare-ups.’

87% of people who had read our publications or online resources said they found the information they needed; and of the people who were members of our online support groups, over 80% said that reading about other people’s experiences helps them.

Ways in which we can support more people

Only 29% of the people who completed our survey said that they found out about us before or at the time of diagnosis. A number of you also told us about the lack of support and information you experienced when you were discharged or after your diagnosis.

We want to do better and make sure more people are able to find the information and support they need at these crucial times.

We also recognise that many people said they need more support around employment and when returning to work, and this is something we are now looking at to see how we could make a difference.

Thank you again to all those people that took part; your feedback will help us to improve the much needed support and information we provide to people affected by neurological problems.