Too much to lose

Too often, people with MS can’t get the support they need to stay active and independent.

Thousands of people with MS rely on services like physiotherapy, occupational therapy and continence support to do the everyday things many people take for granted. Things like making a cup of tea, or moving around the home safely.

But too often, people with MS don’t get this support and this has only got worse during lockdown.

Our report shows that missing out on vital rehabilitation support is having a devastating impact on the lives of people with MS. Too many are losing their mobility, confidence and independence.

This is #TooMuchToLose.

What we’ve done

Thanks to thousands of you, almost all (96%) of the UK’s local health leaders received an email urging them to ensure people with MS can get this vital support, during the pandemic and beyond.

More than 1,150 people wrote letters to their local papers to share their experiences and highlight the issue, which were published online and in print.

We’re now in touch with a number of health organisations to identify and share good practice and help improve rehabilitation services UK wide.

In Scotland, we'll be working closely with the Professional Advisor for Allied Health Professions to ensure the ‘Framework for supporting people through Recovery and Rehabilitation during and after the COVID-19 Pandemic’ delivers improvements for people with MS.

We’re also working in partnership with many other organisations to raise the issue in Parliament. Together with other national charities, we're talking to MPs and Lords through the All Party Parliamentary Groups on MS, Parkinson’s, MND, Epilepsy and Acquired Brain Injury.

Our aim is to raise the issue and agree actions to improve rehabilitation services across the UK.

What you can do

If services still aren’t good enough in your local area, use our new Local Action for MS resources and tools to help you call for these to be improved.

Our toolkit has lots of information on different aspects of campaigning, and there are templates you can use to easily get in touch with your decision makers like your councillors and local health leaders. We can also support you to plan your campaign, and link you up with other campaigners. Whatever action you take, it all makes a difference.

We need to make sure people with MS can keep moving forward

Our research shows:

  • between April and August, almost 7 in 10 (70%) of people with MS couldn’t see a rehabilitation professional when they needed to
  • A third (34%) of people with MS told us their MS symptoms have changed or worsened since lockdown began
  • Nearly 8 in 10 (76%) health professionals we surveyed wanted to see rehabilitation resume as soon as possible, more than any other type of treatment and care.