Photo: Man with MS outside with son and pet dog

Early results from My MS My Needs 2020

Last year we conducted our third My MS My Needs survey and the analysis is now underway. Caroline Howlett lives with MS and has been volunteering with our survey team. Here she gives us a sneak peek of the results!

Hi Caroline. So first off, can you just remind us what My MS My Needs actually is?

My MS My Needs is one of the largest surveys of people affected by MS in the UK. We ask lots of people lots of questions about whether they're getting the treatments and support they need. The results help the MS Society make sure the work they do is focused on what’s most important.

So what do you know about results?

Well the data whizzes are still looking through the responses and the full analysis will be available later this year. With over 8000 people filling in the survey, it’s a big (but exciting!) task.

Can you give us a preview?

I was sad to see that a third of people with MS said they were worried about their future, because we need more and better treatments for MS. And the number was even higher when we looked only at responses from people with primary or secondary progressive MS.

This isn’t surprising. There are now over a dozen effective treatments for relapsing MS, yet still nothing that can stop the progression of disability. But research breakthroughs have transformed our understanding of MS progression, so I’m hopeful that the MS Society’s plan to stop MS will become a reality.

Were there other differences between types of MS?

Yes. For example, we found that people with both types of progressive MS were less likely to feel they have access to sufficient information about their MS than those with relapsing MS.

So the team are already working hard on things like improving our booklet on progressive MS and publishing more blogs on research into progressive MS.

Do you think that most people are getting the support they need?

I was interested to see that a quarter of respondents said they hadn’t accessed any MS Society services (like the Helpline, Local Groups or online forum) at all in the last year.

We need to fully explore the reasons for this, but you gave us lots of things to think about, like…

  • No access to the internet or a computer
  • Difficulties with written information due to dyslexia or visual impairment
  • No way to travel to events or meetings.

The MS Society are thinking about how they can tackle some of these challenges to make sure their services reach everyone who could benefit.

Any last words...?

Just another huge thank you to all those who filled in the survey. As a member of the MS Society Research Network, I get to see first-hand how much of a difference it makes when programmes are designed based on the real-life experiences of people with MS.