My MS My Needs

Over 10,000 people responded to the first survey in 2013, revealing a postcode lottery of treatment and care.

Since then, the survey has run every three years. Alongside this our friends and family survey helps us understand the priorities of the wider MS community.

The results are invaluable for our campaigning work. They've guided our organisational strategy and priorities. And they’ve been key to opening up conversations with decision makers in national government and local services about the things that matter to people with MS.

My MS My Needs 2022

In 2022 over 6,500 people took part in the fourth instalment of our My MS My Needs survey.

Our report shows that too many people living with MS aren’t getting the support and accessing the services they need. We found that, of those who completed the survey:

• 8 out of 10 people who require cognitive support are unable to access it 
• Despite bladder issues being common in MS, 4 out of 10 people who require continence support are unable to access it
• Over half (57%) of respondents say they are not receiving enough regular support and guidance on how to self-manage​
• Too many people are struggling financially and those who are struggling have greater unmet need than those living comfortably – with those living comfortably almost twice as likely to have access to an MS nurse.

The impact of My MS My Needs

A huge thank you to everyone who's responded to our surveys. Here are examples of just some of the things you've helped achieve:

• an All Party Parliamentary Group report on employment, which was used to influence legislation
• a clear case for increased social care funding for younger people living with a long term condition
• informed a major review of health and social care in Wales
• leveraged critical meetings with policy makers, for example on NHS England’s framework for how DMT treatment decisions are made
• helped raise funds for our MS Active Together service
• influenced local health services, to get more MS specialist support.