Let down again, charities and campaigners representing 850,000 dementia patients were united in their criticism of the government this week for failing to produce a solution to the social care crisis, and bring an end to a great injustice at the heart of the health system.

Over 40% of dementia patients end up paying for the aspects of their own care, unlike patients with cancer, heart problems or diabetes, or other chronic conditions treated on the NHS. 

“Vague promises are no longer enough…It is time for the government to take the next vital steps and honour their promises with a concrete plan” – Alzheimer’s Society

It is over twenty years since the Royal Commission on Long term care, set up by the Blair government, highlighted this injustice and suggested that aspects of these care costs should be met by the state. These proposals were rejected, and shamefully this issue still sits stranded in the current government’s intray, despite Johnson’s promise on the steps of Downing Street to “fix it”. Meanwhile the colossal social and economic costs of inaction mount.

Caring for patients with dementia and helping them to manage their symptoms involves daily support, and for many patients this help is defined as social care which, unlike NHS care, is means-tested. 

Families are often shocked to find how little financial support exists for care costs. If you have assets of over £23,000 (including your house) then you have to pick up the costs of your care yourself.   

According to the Alzheimer’s Society the typical cost for the care of a patient is around £100,000  and sometimes up to £500,000 which explains why upto 30,000 people a year end up selling their homes to pay it.

While successive governments in Westminster have dodged the difficult decisions on social care, nearly two decades ago Scottish political leaders took the bold step to provide free personal care, a step rejected south of the border. Help with eating, bathing and dressing – daily tasks that dementia patients need help with, are all funded by the Scottish government.

People in Scottish care homes, aged over 65, who require personal care receive £174 a week to cover their costs. An extra payment of £79 is made for those who need nursing care. These payments are made by local authorities with Scottish Government funding.

NHS support is only available for patients who qualify for a funding pot known as Continuing Care, but only the sickest patients can access it. Many dementia patients don’t meet the criteria.

NHS care is available from GPs and through specialist services such as memory clinics, which are free to access, but day to day support often has to be paid for, or is shouldered by an army of unpaid carers.

Back in 2014 the Alzheimer’s Society estimated that “over 670,000 people in the UK were acting as primary, unpaid carers for people with dementia” and the National Institute of Health Research says this is worth an estimated £14 billion each year.

Some commentators see this as a sensible way to offset the burden from the taxpayer, but research has identified that it comes at a higher cost by taking people out of the workforce, reducing tax receipts and incurring extra health costs.

The cost to businesses alone from employees taking time off to care for people living with dementia, was estimated to be £3.2 billion in 2019 according to the Alzheimer’s Society – 21 per cent of carers give up work or reduce their hours.

Problems with supply
The care sector was financially strained before the pandemic, 400 care homes have already closed over the past 5 years, but the extra costs of covid is threatening the future of many care businesses. Most are now run on a commercial basis – 84% of care homes are run by the for-profit sector, 13% by the voluntary organisation and only 3% are run by local councils. The UK ranks lower than Belgium, the Netherlands, France and Germany, with only 43 beds per 1000 people aged over 65.

Lack of social care has led to 2.5 million lost bed days in the NHS in the five years up to the end of 2019 according to Age UK. 

Over the same period delayed discharges’ have cost the NHS a total of £587 million.  One of the major reasons for these delayed days is a lack of social care support in the community, either at home or in a care home.

The number of emergency admissions to hospitals of people with dementia has risen by 70% in five years at a cost of £400 million, potentially avoidable if more care were in place.

The government needs to lift overall spending on social care by 12.2bn to 2022/23 – based on estimates by the Health Foundation and this funding should be aimed at the 1.5 million people who Age UK say aren’t receiving care at the moment.

Unison is pushing for a scaling up of public sector provision, through a national Care service. Unsurprisingly low pay and poor working conditions are prevalent. A quarter of care staff are employed on zero-hours contracts. There is a big turnover, a third of care staff leave their roles each year and there is a major shortfall of 120,000 staff, which could double by 2030.

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director of the NHS Support Federation

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