Campaigners have urged the Scottish Government to set up a task force or citizens’ jury to address the “indefensible” costs faced by elderly who fund their own residential care.

Cathie Russell of Care Home Relatives Scotland (CHRS) said it was not right that people on low incomes who bought their council houses were being charged double what the council pays for the same care home place.

She said it was disappointing that the bill for the new National Care Service had not addressed the inequity and called for a new working group or citizen panel to be assembled to look at the costs involved and “explore other options”.

It comes after families told the Herald on Sunday that relatives living with advanced dementia are being forced to pay up to £1,900 a week in fees.

Lynn Shand said she was now contemplating taking her mother out of care because her savings are running out and she refuses to sell her home “while she is still alive”.

READ MORE: 'Why I refuse to sell my childhood home to pay for mum's care'

Scottish Labour has pledged to provide free residential care to everyone over 65 who needs it, if elected to government, funded by health and social care Barnett consequentials.

Labour, the Liberal Democrats and the Conservatives have supported CHRS’s call for a government-backed group to be set up to look at care costs.

Ms Russell, said: "People on very low incomes who bought their council houses are often being charged double what the council pays for the same care home places and that, quite frankly is indefensible.

"Whatever the answers are there has to be something better than the current situation and it's disappointing the National Care Service Bill does not address this.

The Herald:

"We need to ask the Government to set up a task force or citizens jury to look at the costs involved and explore other options.

"The ‘dementia tax’ as it’s sometimes known affects everyone who needs 24/7 care who has any assets in property and savings. 

“Currently charges start to apply if your assets are worth more than £18,500 and if you have more than £29,750 you don’t qualify for council help at all. 

“It is the most regressive tax in the country because it can take 100 per cent of everything you and your spouse accrued over a lifetime of hard work. Quite frankly our Americanised system of private care is throwing our most vulnerable older people to the wolves.”

The UK government is to cap the lifetime costs of care at £85,000 but council contributions will not count towards this, meaning poorer families will fare worse. Campaigners say the SNP Government has an opportunity to “do better”.

Alzheimer Scotland wants to see a new system set up whereby people with advanced dementia are assessed and if their care is” primarily health related”, then it should be funded entirely by the NHS, like other terminal illnesses.

Henry Simmons, chief executive of the charity, said: “We await a response from the Scottish Government who know this is our position and have our request and evidence to support it. 

The Herald:

“We would fully support people who are going through this experience now having a direct opportunity to have their voices heard.”

Wendy Chamberlain, deputy leader of the Scottish Liberal Democrats, said a government-backed panel that would hear stories from those affected and help to plot a course forward would be “ a useful addition to the conversation”.

READ MORE: SNP branded 'worse than Tories' for failing to cap care home costs 

Scottish Conservative Shadow Social Care Minister Craig Hoy said: “SNP ministers should listen and engage with individuals and their relatives who are suffering ever increasing costs of social care.”

“Ministers have repeatedly failed to examine the true costs of care to look at future models of funding and the SNP are now hiding behind the creation of a National Care Service to avoid tackling this issue.”

A spokeswoman for the Scottish Government said: “As part of the consultation on the National Care Service the public have had the opportunity to give their views on the future of residential care charges.

"The Scottish Government will take responses to the consultation into consideration when deciding on any future reforms.

“The Independent Review of Adult Social Care concluded that it would not be possible to bring about the scale and impact of the changes that are needed within the health and social care system without making changes to the system itself.

"The National Care Service Bill sets out a framework for the changes we want to make to social care and gives Scottish Ministers powers to work through the detail together with people with lived experience and our delivery partners.”

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