My MS My Needs: Fill in our survey about living with MS
My MS My Needs is one of the largest surveys of people affected by MS in the UK. It asks whether you are getting the treatments, services and support that you need.
By telling us this you’ll help make sure that the work we do is focused on what’s most important.
The survey takes around 30 minutes to do.
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.
By taking part in this year’s survey you’ll help us find out if anything has changed, what still needs to change and what we need to do to help make things better.
Improving access to disease modifying therapies
Our Treat Me Right campaign calls for the right treatment at the right time for people with MS, whatever your situation, wherever you live.
Our 2013 and 2016 surveys found that around half of all people eligible to take a disease modifying therapy (DMT) aren’t. While in 2016 more people told us they are now taking DMTs, we want everyone eligible to have access to the treatment they deserve.
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. In 2018, we launched Our treatment stories, where people with MS talk about what factors affected their decision to take a DMT.
We hope the 2019 survey results will show that more people than ever can access the DMT they need.
Making welfare make sense
Our 2016 survey found that 12% of people were struggling financially, even after receiving benefits.
Our MS: Enough campaign urges the government to make welfare make sense for people with MS. In 2018, we campaigned to scrap the PIP 20 metre rule, which makes it harder for people with MS to get 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 a higher proportion of people were paying for care and relying on friends to care for them than in 2013. And only one in three people were 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 long way to go to before we have a properly funded social care system that people with MS can rely on. By sharing your experiences in our 2019 survey you’ll help us keep fighting.
We need your support
Our 2019 My MS My Needs survey is open 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 work over the next few years to make sure people with MS get the support they need.
How to take part
The survey is available online through the UK MS Register. If you haven’t already signed up to the register, you’ll need to create an account and answer some basic questions about yourself, to access the survey.
If you’d prefer a paper copy, you can ask our Supporter Care team for one at firstname.lastname@example.org, or on 0300 500 8084.
The survey is also available in Welsh, large print, and easy to read. If you would prefer to complete the survey over the phone, you can call us on 0300 500 8084.
MS family and friends
Family and friends play a vitally important role helping people with MS to live well. We want to provide the information and services that will help you most, and to focus our campaigns on what matters most to you.
If you live in the UK and support a family member, partner or friend with MS please complete our MS family and friends survey.