One in six unpaid MS carers is giving up more than 90 hours a week, a leading charity claims today.
The MS Society surveyed 549 friends and family members who support a loved one living with Multiple Sclerosis.
One in three respondents said they had to give up work as a result, 41% said they were providing more than 35 hours’ unpaid care a week – and 16% said they were giving up more than 90 hours.
Yet the government-issued Carer’s Allowance – claimed by 16% of those in the survey – is worth just £66.15 a week and has tight restrictions on taking up other paid work.
Claire Cowling, 69, who along with her husband has supported her 38-year-old son Trevor for five years, said: “I now spend around 70 hours a week washing, cleaning, cooking, driving, dressing sores and tying shoelaces.
“Trevor feeds himself but can’t cut up his food. He’s starting to have trouble going to the toilet too, and I don’t know what will happen when he needs help with that.”
She added: “I’m amazed by how much the care system has done to help, but it would collapse without people like us propping it up – and right now we’re pushed to breaking point.
“We’re terrified what will happen when we die, and I know my son is too.”
Two in five of those surveyed between March and May 2019 said they have a long-term health condition themselves.
One in four felt socially isolated, while nearly a third (29%) had not had a break for more than two years.
And a fifth said they were struggling on their current income.
The charity invited responses from anyone living in the UK that regular supports a family member, partner or friend with MS.
Boris Johnson has promised to build a “cross-party consensus” this year to draw up plans for the future of social care.
Fredi Cavander-Attwood, Policy Manager at the MS Society, called for swift action.
She said: “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.”
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