New analysis from the MS Society suggests a person with multiple sclerosis (MS) could face costs of £110,000 for social care over the course of their lifetime. The charity has also discovered that 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.
The MS Society is now 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.
The MS Society is asking the Chancellor to put urgent investment into social care in the upcoming Autumn Budget to plug the immediate funding gap. It’s 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.
Genevieve Edwards, Director of External Affairs at the MS Society, said: “MS is often painful and exhausting and many people rely on care to help them manage this unpredictable condition. But we know one in three people with MS in England aren’t getting the support they need. Faced with such 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.”
People with MS are typically diagnosed in their 30s and 40s so could need care for several decades. Many have to give up work and rely on disability benefits, which means they have fewer assets to draw on and little opportunity to save towards their care. It already costs an additional £200 a week on average to live with a neurological condition like MS.
Case study: Keith Bright
Keith, age 58 from Norfolk, was diagnosed with MS in his 30s. His condition is now severe and he relies on carers for all personal tasks including getting out of bed, dressing and bathing. Five years ago he started receiving a social care package from his local authority covering 29 hours a week. Last October Keith was told the weekly amount he contributes to his care would increase from £125 to £179, which means he can now only afford carers to help him for seven hours – that isn’t even enough to get him showered each day.
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.
“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.”
 Calculation based on a survey of people with MS responding to questions about the weekly care costs they pay. See more in notes to editors.
 The Extra Costs Commission, Final report: Investigating costs faced by disabled people, pp.13