My MS My Needs 3

Together with the MS Society we’re launching the third My MS My Needs survey – your chance to tell us what it’s like living with MS in the UK today.

My MS My Needs is one of the largest surveys of people affected by MS in the UK. It asks whether people with MS are getting the treatments, services and support that they need. And this information is invaluable for our campaigning work – highlighting where services work well, and more importantly, where improvement is needed.

Our 2019 survey is now open!

What do we do with the results?

In 2016, over 11,000 people with MS completed the survey. The results were the driving force behind a number of our campaigns.

Treat me right

We’re campaigning for the right treatment at the right time for people with MS, whatever your situation, wherever you live.

Survey results from 2013 and 2016 found that around half of all people eligible to take a disease modifying therapy (DMT) aren’t taking them. While the number is going up, we want more people who can take a DMT to have access to the treatment they deserve.

We hope the 2019 survey results will show that more people than ever can access and are taking the DMT they need.We’re working with MPs, health care professionals and people living with MS to understand what barriers there are to taking a DMT, and how we can remove them. And in 2018, we launched ‘Our treatment stories’, where people with MS talk about what factors affected their decision to take a DMT.

MS: Enough

The 2016 survey found that 12% of people were struggling or really struggling on their current income, even after receiving benefits. Our MS: Enough campaign thinks that having MS is enough. It shouldn’t be made harder by a welfare system that doesn’t make sense.

So in 2018, we launched our campaign to scrap the PIP 20 metre rule, which makes it harder for people with MS to receive the support they need to live independent lives. Over 36,000 of you signed the petition, letting the government know that enough is enough.

End the care crisis

Our 2016 survey showed, compared with the 2013 survey, higher proportions of people are now paying for care and relying on family and friends to care for them. And only 1 in 3 people are getting the support they need with essential everyday activities like washing, dressing and eating.

Following these results, we successfully campaigned for more funding for social care in England, with some additional money delivered in 2017 and 2018.

We still have a way to go to before we have a properly funded social care system that people with MS can rely on, which is why this 2019 survey is so important to help us keep fighting.

We need your support

The 2019 My MS My Needs survey is open now until Friday 31 May. We need to hear from as many people as possible who are living with MS in the UK. The results will help us shape our campaigning work over the next few years to ensure people with MS are getting the best service and support possible.

The technical bits

The survey is available online through the UK MS Register. You’ll need to create an account with the Register, and answer some basic questions about yourself, to access the My MS My Needs survey.

If you’d prefer a paper copy of the survey, you can request one by getting in touch with our Supporter Care team by email at supportercare@mssociety.org.uk, or by phone on 0300 500 8084.

The survey is also available in Welsh, large print, and easy to read. And if you would prefer to complete the survey over the phone, you can call us on 020 8438 0700.

Further reading