People with MS often need support to stay independent, and essential support is often provided by family and friends.
We look at the evidence on the needs and barriers of people with MS receiving this essential support. And what provisions are in place for friends and family offering support to someone with MS and what more needs to be done.
Access to rehabilitation services
Rehabilitation services and support are key to helping people with MS maintain mobility and manage MS symptoms. Far too often, people with MS are unable to access services like physiotherapy, occupational therapy or continence support.
In 2020, our research found that since the COVID-19 lockdown began, 7 in 10 people with MS hadn’t been able to speak to a rehabilitation professional when they needed to. Our 'Too much to lose' report presents data from a survey of 1,671 people with MS (August 2020) as well as stories from people living with MS, who told us what a difference rehabilitation makes to them.
During the same period we also conducted a survey of rehabilitation professionals in the UK. 75% of respondents said they were aware of a deterioration in the mental or physical health of their patients directly due to not accessing therapy during lockdown. See the full findings in our Survey of AHP professionals report.
Download our 2020 rehabilitation reports
End the Care Crisis
We know the social care system in England is in crisis. 1 in 3 people living with MS aren’t getting the support they need with essential everyday activities like washing, dressing and eating.
In this report, we move beyond the statistics. People affected by MS share what social care really means to them and their families.
Download our end the care crisis report
Family and friends provide vital support to people with MS, often stepping in to fill gaps in state support with significant impact on their own lives.
In 2019, we first surveyed family members and friends providing regular care and support to someone with MS in the UK. In 2022, we surveyed family and friends again.
We found that around two thirds (66%) of those supporting someone with MS don’t have the practical, emotional or financial support they need. This is despite the fact that 42% of people spent 35 hours or more a week providing support – the equivalent of a full-time job.
We'll be working hard to improve the support we offer, and to campaign for UK Governments to do the same.