Ministers in Scotland have failed to tackle the “enormous inequality” in health and social care that causes 10,000 people with advanced dementia to pay £50.9m a year for their care, according to Henry MacLeish.
A landmark report, resulting from a working group led by Mr. McLeish, warned in 2019 that patients are being frustrated by a system that classifies them as receiving social care rather than health care needs.
This means that they are not eligible for the costs of their care by the NHS like those with other chronic diseases.
Mr MacLeish said the report ‘delivering equitable dementia care to people with advanced dementia’, with its recommendations, had been sent to the Scottish government for implementation, but three years later no progress had been made.
The former First Secretary of Labor spoke to the Herald on Sunday after a conference on the issue organized by the Scottish Dementia Research Consortium, which took place in Glasgow last week.
“In our best analysis about 10,000 Scots – they have family, friends and a community affected by this – have advanced dementia. They both live and die.”
“They have reached a point where all of their important needs are health needs. But what happens is that they are seen as needing social care… If they are considered to be in need of health care, they will be treated as free when needed.
He said: “People with advanced dementia who live in care homes pay an estimated £49m a year, plus people with advanced dementia who receive care at home pay an estimated £1.9m – up to £50.9m.”
“I would describe this situation in 2022, this case of advanced dementia as an ethical breach that exposes the massive inequality at the heart of care policy in Scotland.”
He added: “Alzheimer’s disease in Scotland has been communicating with the government for the past three years on this issue. The talks have not gone anywhere. After three years we need to make some progress.”
Mr MacLeish, the architect of the free personal care policy, 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 access to free NHS care could not wait until the new service was brought in.
“The government is right to develop a national welfare strategy but it may take three or four years, and in the meantime, this blatant injustice must now be addressed,” he said.
“Like patients with any other fatal disease, they should receive free health care at the point of need. Those people who need free at the point of need [care] It may be paid through taxes and national insurance.
“They are going through the most difficult period in their lives and on top of that some of them cannot afford their healthcare needs and as a result, you are having two problems. One is they are paying £50m too much and secondly, they are not getting the best healthcare and nursing care because some He may not be able to afford it.”
He continued, “I will ask all other political parties to ask questions, to clarify points on the topic where we need to move soon.”
MacLeish also warned that because of demographic trends, the number of people with advanced dementia in Scotland is on track to increase.
He noted that by 2050 there will be 156,600 dementia patients, with nearly 10 percent (15,500) in the advanced stage of the disease. He said the total cost of dementia in Scotland was expected 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 results in complex health and nursing needs
• People with advanced dementia pay an estimated £50.9 million a year in social care fees for care that does not provide the health or nursing care they need.
Scottish Conservative Shadow Welfare Minister Craig Hoy said: “It is deeply disappointing that SNP ministers have been so slow when it comes to taking steps towards improving dementia care.”
Social Welfare Minister Kevin Stewart said: “Caring for a loved one with dementia can be challenging, and it is essential that our health service at all levels values older adults and their needs.
“We are currently consulting on a new health and social care strategy for older adults.
We will also soon publish a framework for Healthcare for Those Living in Care Homes that aims to transform healthcare for people living in care homes, including those with dementia.
“Free personal and nursing care is available to adults of any age, regardless of status, capital or income, who are assessed by the local authority as needing this service. For those who self-finance their stay in a nursing home, payments are usually made. Directly by the local authority to the nursing home operator to cover the costs of providing these services.
Over the past two years, the Scottish Government has increased the weekly payment rates for free personal and nursing care by 18.3%, with the personal care component rising from £180.00 to £212.85 since 1 April 2020 and the nursing care component rising from £81.00 to £95.80. ”