‘I live in fear of debt collectors’: disabled people in England tell of toll of soaring care costs | Disability

Disabled people in England are finding themselves in severe financial hardship owing to rising social care costs and the increase in the cost of living.

Social care, unlike the NHS, is not free at the point of need. As disabled people are being forced to pay for their care out of their benefits, some are finding themselves thousands of pounds in arrears to councils. Others are having to give up essential care because they cannot afford the fees, or skip meals or hygiene products to pay for care.

Some of the readers affected spoke to the Guardian.

“I’ve been receiving social care for personal care, help around the home, and shopping since medically retiring from the civil service over a decade ago.

“My local council wrote to me in December 2022 stating that they had reviewed their care policy and that my care charges were to increase from £27.33 per week to £146. They offered me and others affected by the change in their policy transitional protection for 12 months. So from December this year, I have now got to find an extra £118.67 per week. I’ll be forced to be total financially dependent on my husband, who only works part-time so he can give me the additional care I need.

“I provided 13 receipts to my local council for my financial assessment, with a written explanation as to why it was necessary for me to buy or spend that money. On appeal, my council refused them all.

“I can’t believe that in the 21st century, disabled people are being treated in this manner. It’s archaic.”
Debra, 60, who has a congenital joint condition

‘I don’t know what I’m going to do as I can’t pay’

“I’ve never had to pay for my social care but in 2022 I received a letter from my local council asking me to pay around £2,000 for the year. I don’t have an income aside from my benefits, so to pay it I ended up selling things including silver trinkets from my christening. It was so stressful I couldn’t sleep at night.

“A long battle with cancer when I was a child had repercussions on my body, and recent major spinal surgery means I use a wheelchair. I have 29 hours of care a week and the help I get is my ticket to a life – full stop.

“Even with care, I use a food bank and eat one meal a day. A shower is now a treat.

“I’ve not been sent a charge for this year yet and I’m terrified of how much it will be. I don’t know what I’m going to do, as I can’t pay.”
Louise*, 37, has complex physical needs and mobility issues, from north Northamptonshire

‘I live in fear that debt collectors will knock on my door’

“In 2019 my local council asked me to pay £76 a week towards my social care from my benefits, but I was unable to pay. Six months ago they said it’s now £90 a week.

“I’ve been able to push back on the understanding that I will complete a continuing healthcare application to apply for NHS funding and, depending on the result, either pay for the care or submit a new financial assessment and contribute what I can. I suspect I now owe around £30,000-40,000.

“I worked full-time for most of my life but had to stop 11 years ago when my health deteriorated – I use a ventilator to help me breathe when I sleep. I never asked to become seriously unwell and now I feel like a leech on the system.

“I receive six hours of care a day from an amazing company who help with medication, hygiene and cleaning. I would be lost without them. I get £1,200 a month for employment and support allowance and personal independence payment, including a severe disability premium. It’s still not enough with the cost of living and I’m paying for bills using credit cards.

“I feel under enormous pressure and I live in fear every day that debt collectors will knock on my door.”
Mac, 35, former manager who has multiple heart, endocrine and immune conditions, from Essex

‘I can’t even afford sanitary supplies’

“I haven’t had any social care since 2006 because it costs too much. I get around £450 a month in benefits, and Asda’s Just Essentials chicken soup has been my saving grace as I can eat it with frozen veg and bread. It used to be 23p a can but it’s now 45p, which has crushed me.

“How can people work if they don’t even have food in their stomachs? That’s the level of poverty people like me are facing. I used to work, but my hands are so bad I can’t write at all. I have hypermobility and my joints constantly pop out and don’t always go back in. I need support getting to the shower, cleaning and doing things in a timely manner. It’s not that I can’t do those things, but it’s not easy. It would be nice to be able to afford support and care.

“I’m going through menopause which is not great. It’s also expensive and I can’t even afford sanitary supplies. The anxiety of not knowing how to pay for things causes more and more distress.”
Rachel*, 49, full-time student who has hypermobility and fibromyalgia, from London

*Some names have been changed.