MINISTERS in Scotland have failed to address a “massive inequity” in health and social care which sees 10,000 people with advanced dementia pay £50.9 million a year for their care, according to Henry McLeish.
A landmark report, which resulted from a working group led by Mr McLeish, warned in 2019 that patients were being let down by a system that classes them as having social care and not health care needs.
It means they are not eligible to have their care costs met by the NHS like those with other progressive terminal illnesses.
Mr McLeish said the report “Delivering Fair Dementia Care for People with Advanced Dementia”, together with its recommendations, was sent to the Scottish Government for implementation, yet three years later no progress had been made.
The former Labor First Minister spoke to the Herald on Sunday following a conference on the issue organized by the Scottish Research Dementia Consortium held in Glasgow last week.
“On the best analysis we have around 10,000 Scots – they have family, friends and community affected by this – and they have an advanced stage of dementia. They are both living and dying.
“They have got to a point where all their important needs are health needs. But what is happening is that they are being looked at as having social care needs…If they were regarded as having health care needs, they would be treated as free at the point of need.
“People with advanced dementia living in care homes are paying an estimated £49m a year, plus people with advanced dementia receiving care at home are paying an estimated £1.9m – coming to £50.9m,” he said.
“I would describe this situation in 2022, this issue of advanced dementia as a moral outrage which exposes a massive inequity at the heart of care policy in Scotland.”
He added: “Alzheimer’s Scotland has been engaging the government for the last three years on this issue. The talks as having gone no where. Three years on we need to make some progress.”
Mr McLeish, the architect of the policy of free personal care, said he welcomed the Scottish Government’s plan for a national care service, but the help needed for patients with advanced dementia to allow them to get free NHS care could not wait until the new service was brought in.
“The government is right to develop a national care strategy but that might take three or four years to do, and in the meantime, this glaring inequity has to be tackled now,” he said.
“Like patients with every other deadly illness they should receive health care free at the point of need. Those people who need the free at the point of need [care] have paid in through their taxes and national insurance.
“They are going through the most difficult period in their lives and on top of that some of them can’t afford to even pay for their health care needs and as a consequence you have two problems. One they are paying £50m too much and secondly they are not getting access to the best health and nursing care because some might not be able to afford it.”
He continued: “I would ask all the other political parties to be asking questions, to be making points on the issue as we need to move soon.”
Mr McLeish also warned because of demographic trends the number of people in Scotland with advanced dementia was on course to increase.
He pointed to a projection that by 2050 there would be 156,600 dementia patients with some 10 per cent (15,500) suffering from the advanced stage of the illness. He said the total cost of dementia in Scotland was forecast to rise from £3.4 billion in 2019 to £9.4 billion by 2040.
The main findings of the 2019 report were:
• Dementia is caused by progressive neurological disease processes, such as Alzheimer’s disease
• Advanced dementia produces complex health and nursing care needs
• People with advanced dementia are paying an estimated £50.9m per year in social care charges for care which doesn’t provide the health or nursing care they require
Scottish conservative shadow social care minister Craig Hoy said: “It is deeply disappointing that SNP ministers have clearly dragged their feet when it comes to taking steps towards improving the care for dementia patients.”
Social Care Minister Kevin Stewart said: “Caring for a loved one with dementia can be challenging and it is fundamental that our health service at all levels value our older people and their needs.
“We are currently consulting on a new Health and Social Care Strategy for Older People.
“We will also shortly publish a healthcare framework for those living in care homes that will aim to transform the healthcare for people living in care homes including those with dementia.
“Free personal and nursing care is available to adults of any age, no matter their condition, capital or income, who are assessed by their local authority as needing this service. For those self-funding their stay in a care home, payments are normally made directly by the local authority to the care home operator to cover the costs of providing these services.
“Over the last two years the Scottish Government has increased the free personal and nursing care weekly payment rates by 18.3%, with the personal care element rising from £180.00 to £212.85 since 1 April 2020 and the nursing care component rising from £81.00 to £95.80.”