Karen Hargrave had to sell her flat and borrow thousands of pounds from family to help pay for her husband’s rising care costs – with the couple spending around £65,000 so far.
The 36-year-old from Cobham has been happily married to James for almost seven years. However, things took a turn after the couple both developed long Covid in 2022.
Although Karen recovered, James’ condition worsened. By 2023 he was completely bed bound and had also developed very severe Myalgic Encephalomyelitis (ME).
ME is a long-term condition that can affect different parts of the body, with symptoms including extreme tiredness, sleep problems, problems with concentration and symptoms getting worse after physical and mental activity.
Karen said: “James was on a liquid diet because he didn’t have the energy to chew and swallow and he couldn’t have a conversation. He also experienced very severe sensory sensitivity issues and went from being very healthy to very disabled in a short space of time.”
James, now 39, was having a career break at the time when he developed ME and therefore was unable to start looking for another job as his condition deteriorated.
Karen owns a small consultancy business and does most of her work on a freelance contract basis and said the financial impact of being a single-income household was “huge”.
“With the nature of my work, because it is contract-based, I don’t have a regular monthly salary and on the one hand, my job gives me the flexibility to be my own boss and work around a very complicated life. But it does also mean I am very conscious that my income is pretty much all we have.”
James receives a total of £1,300 a month from his employment and support allowance payments and personal independence payments (PIP).
The couple’s energy bills are quite high due to always being at home and James needing to keep warm.The other sting to Karen and James’ finances is James’ care costs, with Karen estimating it has cost them £65,000 so far to provide him with help.
Karen explained: “Very severe ME is quite a unique condition in that there is effectively no NHS specialist services that are available for someone in James’ position.
“So what that means is the very small number of specialists in the UK basically all work in the private sector, so on top of everything else we have to pay for private medical bills, private prescriptions and the biggest piece of the puzzle is the care funding side of it, which has been astronomical and far beyond the income we have.”
A private healthcare appointment can cost around a few hundred pounds per appointment, according to Karen and she is having to pay £3,500 a month to give James 24/7 care.
She said: “I have to budget very carefully. James needs care around the clock. If I am not providing it, the only way for me to provide it is to have someone who is being paid to do it.
“At the moment, his care bills are £3,500 a month, which covers 9am to 4pm Monday to Friday when I am working. And then I have 12 hours of extra care a month that falls outside the usual care hours if I need to work longer hours, leave the house or cover any time off, when I am not looking after James.”
One of James’ carers occasionally does a few hours or a night pro bono as “volunteer work” to give Karen a chance to have some time off for herself.
Karen admits the only reason the couple are not in a complete financial crisis yet is because they had a relatively good amount saved, sold a flat they owned and borrowed thousands from family members.
“We finally managed to sell our flat at the end of last year at quite a significant loss but we just needed to get it sold to get the money and James’ share went towards paying off some of the money we had borrowed and the rest of the proceeds is what I have been using to pay the ongoing care costs,” she said.
Although Karen didn’t want to say how much the house sold for in December last year, she said it was roughly £35,000 less than the original purchase price in 2019.
Karen called this an “unsustainable situation” and has been trying to get either the NHS Integrated Care Board or the local authority to cover the costs of James’ care for the past two years, which she is in the process of appealing.
Their council initially offered a package which would cover 20 per cent of the care costs, but then provided a revised package, offering around £2,960 a month, which Karen said would make a “huge difference” and would take off significant financial pressure, but still did not reflect James’ 24/7 care needs.
If the appeal to the NHS isn’t accepted, Karen is concerned about how she will come up with the money to pay for James’ care.
“It is just so scary and I honestly try not to think about it. With my income, there is a bit left at the end of the month after rent, bills, and other living expenses, but not £3,500 worth. With our savings, maybe we have a year left before that pot of money will go,” she explained.
Karen felt there was no option that would keep both her and James safe and well that didn’t involve receiving support from either the NHS or the local authority.
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