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MS family and friends aren’t getting enough support

Our new research shows that half of family members and friends supporting someone with MS aren't getting the support they need.

Our 2019 friends and family survey

Last June, we surveyed family members and friends who provide regular care and support to people with MS.

Of the 549 people who completed our online survey:

  • half said they don’t have the practical, emotional or financial support they need
  • one in three (34%) have given up work as a result
  • 41% spend 35 hours or more a week providing support.

Nearly all respondents to the survey (90%) said their health and wellbeing had been negatively impacted.

What needs to change

Family members and friends told us the changes that would make the most difference were:

  • the availability of appropriate care and support services for the person with MS
  • respect and recognition of their role from health and care professionals
  • information and advice.

We'll be working hard this year to improve the support we offer, and to campaign for UK Governments to deliver on the recommendations we set out in our report.

“I spend 70 hours a week supporting my son”

Clare, 69, lives in Buckinghamshire. She and her husband have been supporting son Trevor, 38, since his primary progressive MS diagnosis five years ago.

Clare said: “I left my full-time job when Trevor was diagnosed and found part-time work so I could be at home more. I now spend around 70 hours a week washing, cleaning, cooking, driving, dressing sores and tying shoelaces.”

“Thinking about what might happen long term is one of the most challenging aspects of caring. We’re terrified what will happen when we die, and I know my son is too.”

We need a properly funded care system

Fredi Cavander-Attwood, our Policy Manager, said: “The adult social care system is under more pressure than ever and failing to provide the support older people, disabled adults and their families need. Residents of the UK now have a 65% chance of providing unpaid care in their adult lives – massively impacting their employment prospects, financial stability, and health and wellbeing.

“More than 130,000 people live with MS in the UK, and it shouldn’t be assumed that their family and friends can plug the gaps in our broken social care system. We need a fair, effective and properly funded care system across the UK so no one is forced to give up work to ensure their loved one gets proper support.”

Download our MS Family and Friends survey findings report