Care funding in an age of austerity.

The case of a family, which claims the NHS ‘turned its back’ on their sick mother and cost them £250,000, is another example of the complexities of providing care for an ageing society.

Russell Byfield, from West Yorkshire, and his family, say Leeds City Council would not fund the whole cost of care for his wife, Maureen, when they moved south to be near their children, after she developed dementia. The NHS also refused to contribute even though Maureen was receiving nursing care.

After nine years, the family had spent around £250,000, paying just under £500 a week, and could not contribute any more as all Russell Byfield had was his state pension. Their finances were reassessed and Leeds City Council agreed to meet the full cost.

Unfortunately, the Byfield family's experience is not unusual. The Alzheimer's Society says thousands of families find themselves facing a similar situation.

Crucial spending on care services for the elderly was among public sector cut backs during the decade of austerity following the banking crash and some estimates are that it was as much as around a quarter per person.

The typical cost of dementia care is £100,000, although in some cases, it can exceed £500,000 where people need specialist nursing support for the rest of their life.

Recent calculations from publically-available information from NHS Digital, the Scottish Government and StatsWales, suggest that, 12.5% of people pay for their own social care; 37.5% have their costs met by family and friends, 21% are local authority funded and 30% receive no, or little, financial help.

Not only dementia patients are suffering. Research by charity Age UK says that once other illnesses and conditions associated with ageing are included, 1.4 million people aged more than 65 do not receive the help they need, a rise of nearly one-fifth since 2016.

Analysis has shown that reported local authority spending on care for the over-65s has fallen by a quarter, to £747 per head in England since 2010 once inflation is taken into account, although the government says that this does not include a separate £2bn annual care budget, largely funded by the NHS.

While facing the same pressures of an ageing population, in comparison, Wales and Scotland have largely protected their budgets. There is no comparable data available for Northern Ireland.

Local authorities, which administer the system, have sympathy for those who rely on their services. The Local Government Association (LGA) was so disillusioned with waiting for the government that it produced its own Green Paper calling for tax rises so more could be invested in the care system.

Central to care of older people is a systemic funding conflict between NHS and local authority funding.  Care funding is means tested and, in some circumstances, can be contributed to by local authorities while nursing care is supposed to be NHS funded.

Many people and their families have paid for care only to find out later that they were entitled to an NHS contribution because of the type of support required.  As a result, the NHS faces a backlog of care funding claims that are often successful and paid retrospectively.

For a person without dementia, it can be fairly straightforward to judge necessary care and nursing needs and agree financial contributions from the NHS or local authorities.

But it is often far more complex where a person living with dementia might need support with all aspects of daily living but their needs are similar to those of elderly people without dementia. People in this category often struggle to recover NHS funding for their care.

As some people living with a more severe form of dementia often need one-to-one, round-the-clock support, care costs can be extensive and an additional burden to badly-stretched NHS resources.

Although, it makes sense for parents to move nearer to their children, as in the Byfield’s case, this is not always welcomed by local authorities which can be reluctant to fund care outside their area unless there is no adequate facility within their region.

Charities, the NHS and local authorities are concerned that proper debate about social care funding has been ducked by successive governments because the solution is likely to require politically-unpopular measures such as higher taxes, individual contributions or unlocking value from peoples’ homes.

As a result many families are either seeing their loved ones denied the necessary care, or having to top up costs themselves and this will not resolve itself naturally as more people live longer with associated health difficulties such as dementia.

Many of today’s older people were born in the post Second World War baby boom. UK demographics, with falling birth rates due to birth control and the cost of raising children, coupled with a rising retirement age, means that there will be fewer working people able to fund, or provide, day-to-day care for their elderly or ailing parents. 

If one of the world’s richest nations cannot find the compassion, intellectual rigour and political will to address this conundrum, the cost to the NHS budget and society, will be profound.