An MS Society flag in the foreground, Big Ben in the background

Government inaction causing catastrophic care costs for people with MS

Our new analysis suggests people with MS could face costs of £110,000 for social care over the course of their lifetime.

We also discovered two in three local authorities in England have introduced new, or increased, charges for care in the past three years – putting it further out of reach for many who desperately need it.

Keith can't access the help he needs

Keith lives in Norfolk with his wife. He has advanced MS and relies on carers for all personal tasks, including getting out of bed, dressing and bathing.

Five years ago Keith started receiving a social care package from his local authority covering 29 hours a week.Then last October he was told the weekly amount he contributes to his care would increase from £125 to £179. As a result he can now only afford carers to help him for seven hours. And that isn’t even enough to get him showered each day.

Stress levels rise with cost of care

Keith said: “My wife is unwell herself. She’s got heart problems and isn’t meant do any strenuous lifting, but has no choice but to help me in and out of bed now. She also can’t do anything for herself, because without her I can’t even go to the toilet and we’ve not got enough care to help me do that.

Social care feels like a club that you can’t join, and we just desperately need a break from all of this stress.

“As for me, I’m really struggling to manage my symptoms and to do the basics, and it’s having a big impact on our health and our relationship. I drive an adapted vehicle, but because of the stress of it all and worrying about our financial situation, I had an accident with my car a few months ago. I just felt so overloaded, I couldn’t focus on what I was doing.

“We just can’t do this anymore, we’ve spent over £28,000 in five years on social care, and we don’t know what’s going to happen in the future. Social care feels like a club that you can’t join, and we just desperately need a break from all of this stress.”

Government must act

We're calling on the Government to end these catastrophic care costs and give social care the proper funding it needs

In a recent survey of nearly 4,000 people across the UK who have care needs, one in five people with MS said they couldn’t afford the support they require. The survey also found people are having to make difficult decisions to ration care or go without, while more pressure is being placed on families and friends to provide unpaid care.

We're asking the Chancellor to put urgent investment into social care in the upcoming Autumn Budget to plug the immediate funding gap. We're also calling on the Government to deliver its long-awaited Green Paper on social care, with proposals that will make care more affordable and protect people from excessive costs they cannot predict.

People with MS shouldn't pay for a system in crisis

Our Director of External Affairs Genevieve Edwards, says: “We know one in three people with MS in England aren’t getting the support they need. Faced with unaffordable care fees, people with MS are being forced to choose between getting care and paying for other everyday essentials.

“The question of how social care should be funded has been left unanswered for too long, leaving people with MS paying the price for a system in crisis. We’re urging the Chancellor to give social care the immediate investment it needs in this upcoming Budget so people can get the care they need now.”

Speak up for everyone with MS

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