Dementia hit families who 'saved all their lives' at mercy of unfair care home system

Her son Peter says she is paying almost £1,500 a week for a care home place because she has the illness, saved diligently and therefore has money, and is at the mercy of private providers who “can charge what they please”.

Mr McClellan, 59, says self-funders like his mother are “propping up” the care home sector because they are charged substantially higher fees than those unable to pay.

Read more: Think Dementia: Why are we campaigning for Fair Care?

Mr McClellan says he was faced with very limited choice when it came to choosing a place for his 80-year-old mother because of a shortage of residential beds in the Oban area, where they are from.

After her personal care allowance is deducted, he says she is paying £1,409.75 a week which has “burned away” almost a lifetime of savings in a matter of months.

Mr McClellan, who works as a school janitor and lives in Dalmally, around 25 miles from Oban, said he has no complaints with the care his mother has received and did not want to name the home.

However he claims his mother is paying 108 per cent above the rate set by his local authority, Argyll and Bute Council, for residential care.

Local authorities will not fund residential care for those who have more than £27,250 in assets, including home ownership.

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A recent report by the Competition and Markets Authority (CMA) concluded the care home is sector is “maintaining provision” by charging self-funded residents higher fees, estimating that the average differential in Scotland is 38%.

Alzheimer Scotland described the family’s experience as “all too familiar”, and said it highlighted the case for reform of the adult social care system.

The charity’s Fair Care campaign, backed by the Herald, is calling on the Scottish Government to fund end of life healthcare costs for dementia patients, when a high level of nursing care is required, in line with other terminal illnesses.

The Government is set to publish the findings of a review of adult social care in the coming weeks.

“There should be no fees charged for what is a medical condition, but there is clearly a serious problem with the existing system for charging fees”, Mr McClellan explained.

“In Scotland, self-funding residents are paying an average of 38% more than the ‘standard fee’ local authorities set themselves – for the same homes and for the same services.

“Our mother was discharged from hospital earlier this year, into a privately-owned residential home that is charging a weekly fee of £1,586.75.

“Even after the personal care allowance deduction she is still having to pay £1,409.75 per week

“The fees are listed as ‘£667 per week – £1,587 per week’ on carehome.co.uk.

“The low figure is close to the Argyll & Bute ‘standard rate’ that they set for themselves, and the higher figure corresponds with our mother’s self-funding fee before personal care deduction is applied.

“Fees need to be abolished, but I hope that at the very least they cap them at a reasonable, universal rate until that happens.”

Read more: Think Dementia factsheet: What is dementia and how can I access support

Peter, who has power of attorney for his mother, believes the current care system is unfair because it fails to differentiate between the “truly wealthy” and families who spent conservatively to save for the future.

His late father Donald worked for Caledonian MacBrayne ferries and he says his parents “spent little on themselves”.

“There is a vast difference between truly wealthy people who really can afford it – for whom the expense of a few hundred thousand pounds would barely dent their capital – and the elimination in a matter of months of a working-class family’s lifetime of hard-earned savings,” Peter said.

“Taking the view that it is acceptable to confiscate elderly people’s life savings because having some money in the bank means ‘they can afford it’ is absolutely wrong.

“Our mother spent her working life caring for other people, particularly the elderly.

“Now when our mother needs care herself, and is at her most vulnerable, almost everything they worked for all their lives is being taken from her.

“We are far from rich. She has had decades’ worth of hard work and saving burned away in months, purely because she and her husband were diligent enough to work hard and save – and because the private sector can charge as it pleases.”

Jim Pearson, director of Policy and Research from Alzheimer Scotland, said: “This family’s experience, is unfortunately all too familiar, and highlights why it is imperative that there is a full review of adult social care in Scotland which includes the system for social care charges.

“People with advanced dementia should not have to pay social care charges for health and nursing care to meet the complex needs they have in advanced illness and toward end of life.”

A spokeswoman for the Scottish Government said: “We understand the distress and anxieties faced by families like Marion’s, which is why we are working with Cosla, carers, service users, and the social services sector to take forward a national programme of reform of social care support.

“This will include looking at the value and cost of social care and how it is funded, and build on existing great work across Scotland to achieve a high quality and sustainable system for people, carers and staff, including those who live and work in care homes.”

l The Herald is supporting Alzheimer Scotland’s Fair Care campaign.

To sign the petition go to alzscot.org/fair-dementia-care-sign-up-form