Free personal care vow for under-65s with dementia

Dementia sufferers under the age of 65 will get free personal care, health secretary Alex Neil has said. Picture: PA
Dementia sufferers under the age of 65 will get free personal care, health secretary Alex Neil has said. Picture: PA
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HEALTH Secretary Alex Neil has pledged to close a loophole that results in dementia sufferers under the age of 65 being denied free personal care.

In a move marking a significant change in health policy, Neil said he was “determined” to ensure that all Scottish dementia sufferers get the care they need regardless of their age.

Speaking to Scotland on Sunday, Neil said he would tackle the anomaly that has seen younger dementia patients miss out on the help which people are entitled to once they reach 65 as a result of Holyrood’s groundbreaking free personal care legislation.

His promise to assist the thousands of Scottish families affected by early-onset dementia came after he met the wife of the former Dundee United footballer Frank Kopel, who contracted the disease when he was just 59.

Amanda Kopel, who has to pay upwards of £350 per month for the care her husband requires, has been campaigning for a year for free care to be extended to patients who are diagnosed before they reach 65.

Yesterday Neil said he was “very sympathetic” to the issues raised by Amanda Kopel and promised that the Scottish Government would work with the NHS and the benefits system to ensure that all dementia patients are treated equally.

“What I am looking at is how to get greater consistency so that people, irrespective of age, get the services they need,” Neil said.

Free personal care costs around £450 million a year and was one of the most radical policies of the early years of devolution.

Originally enacted by Henry McLeish’s Labour-led administration in 2002, it has been wholeheartedly supported by the SNP despite the spiralling costs of caring for an ageing population.

The legislation enables personal care to be provided free for people over 65, provided they are assessed as needing it. People can be eligible whether they live in care homes or at home.

Of the 85,807 dementia sufferers in Scotland, 3,201 are under the age of 65 and therefore not entitled to the help.

Although the under-65s may be eligible for certain state benefits, many patients experience difficulties extracting money from a complex system which is currently undergoing major reform.

They also suffer from the fact that many care services are geared towards working with more elderly sufferers, who are not nearly as active as younger dementia patients.

Neil told Scotland on Sunday that the complexity of the ­benefits and care system was such that the solution might not be as straightforward as adapting free care legislation to include younger dementia patients.

“We need to look at the total picture,” Neil said. “The solution may not be as simple as extending free care to under 65-year-olds, because under 65-year-olds, for example, qualify for certain state benefits that over 65-year-olds don’t.

“So what we need to do is look at all of this and work out the best way to achieve the objective. The objective is that somebody like Frank and his wife get the support that they need. Age shouldn’t be the issue. The issue should be that everybody with dementia gets the services that they need. So that’s what I am looking at.

“I had a very, very good meeting with Mrs Kopel earlier this week. It is quite a complex area. What I want to do is simplify it and, most importantly, to make sure that people get the services and support that they need.”

Neil added: “They have highlighted a loophole in the system that we need to look at, and look at how we make sure that people with dementia who are under 65 get the total support that they need.”

The Scottish Government has commissioned an expert review into “continuing healthcare”, which is examining treatment of patients who require 24-hour intensive and specialist care.

The review reports next month, and Neil has arranged to meet Amanda Kopel to report on progress in February.

“It may not be through free personal care, it may be through an amendment to continuing healthcare, for example. But you can say I am determined to solve the problem,” Neil added.

Last night, Amanda Kopel, of Kirriemuir, said she was delighted by the response of the Health Secretary, who himself has experienced the pain 
of caring for a loved one with dementia.

“I have to admit I was blown away during my meeting with Mr Neil. His father was 81 when he had dementia. Frank is younger. But it doesn’t matter what it says on your birth certificate, it is a cruel, cruel disease.”

She receives a state pension of £40 a week and a carer’s allowance of just £3.81 a day to look after her 64-year-old husband, who was a Dundee United stalwart during the team’s rise to the top of Scottish football in the 1970s and 1980s.

“I was born and bred in this country. I paid all my taxes and all my national insurance contributions – as did Frankie, but we have had to fight for everything,” said Kopel, who has petitioned the Scottish Parliament as part of her 

“It costs me between £350 and £400 a month to provide carers for Frank. But 400 
yards away they are providing exactly the same service for someone over 65 for free.”

A spokeswoman for Alzheimer’s Scotland said: “We very much support this commitment to address these issues, which affect thousands of Scots.”