In an article from February's issue of Commentary magazine – a special edition focusing on end-of-life care – Simon Bottery from The King's Fund explains why the social care system can't keep pace with increasing pressure.
The mayor of Greater Manchester, Andy Burnham, tells a painful story about the failure of end-of-life care.
In 2007, when he was a government minister, Burnham’s sister-in-law, Claire was dying of breast cancer in the Royal Marsden Hospital and asked him to arrange for her to go home to be with her four children. Burnham had to return a day later and tell her that, after a day of phone calls trying to arrange the move, it wasn’t possible: the health and care ‘system’ had beaten him.
‘I was a minister who knew how the system worked, so what chance have families who are at a low ebb and don’t know where to start got?’ he told a King’s Fund event in 2013. ‘As a government, we were talking about choice. But it was a painful discovery for me to find we were unable to deliver to this most fundamental of choices.’
It would have been little comfort to Burnham but the percentage of deaths occurring in hospitals – as opposed to at home or in care homes or hospice – was, in fact, slowly declining at the time and that trend has continued. In 2014, for the first time less than 50% of deaths occurred in hospitals.
There is evidence that, at least for the very old, deaths in care homes are more associated with comfort than those in hospitals – or even those happening in the individual’s own home.
However, if more people are dying in their own homes or in care homes, it inevitably places extra importance not just on out-of-hospital health services but on the delivery of effective, compassionate and high-quality social care services too. There is evidence that, at least for the very old, deaths in care homes are more associated with comfort than those in hospitals – or even those happening in the individual’s own home – so social care staff are surely getting many things right.
But we know that social care’s role in end-of-life care still needs significant improvement. The first, most obvious issue is access. Unlike the NHS, social care is means-tested, so many people must pay for it themselves. But even for those who are entitled to free care, carrying out a social care assessment inevitably takes time, something that is particularly precious at the end of life. As the 2011 Palliative Care Funding Review observed: ‘At this time, the last thing[s] individuals and families should be facing are arguments over funding of the care they need and delays in the provision of care due to complex systems and procedures.’
The charity Macmillan Cancer Support found that 97% of the healthcare professionals it surveyed agreed that complexity of the social care needs assessment was an important barrier to people receiving appropriate social care at the end of life. It is not surprising, then, that reports – including the final report from the independent Barker Commission set up by The King’s Fund – have recommended that end-of-life care should, like the NHS, be free at the point of use. The commission argued that making critical care free at point of use would make the system simpler, eliminating the current confusion between different funding stream such as social care and, particularly, NHS Continuing Healthcare.
Councils have reduced the amount they pay for care, putting sometimes intense pressure on care homes and home care agencies – and the staff working in them.
Free end-of-life care would, of course, inevitably have to compete for funding with a range of other health and care priorities, at a time when public support for social care has been falling. Since 2009/10, spending by local authorities on social care has fallen by 7% in real terms.
One of the main impacts of that spending reduction has been on the stability of the social care marketplace. Councils have reduced the amount they pay for care, putting sometimes intense pressure on care homes and home care agencies – and the staff working in them. The number of nursing and residential care homes is falling, home care companies have been handing back contracts and vacancy rates and staff turnover in the social care sector are much higher than average in our economy. This latter issue may be particularly important to end-of-life care because, while most palliative care providers report good relationships with the care homes they serve, many cite high staff turnover in care homes as a barrier to providing the type of training and support they would like.
There are signs that councils have recognized that cost-cutting has reached, and probably surpassed, its limits. In 2016/17, the rates paid by councils for home care and care home fees rose by 7% and 3% respectively. Some of that increase should reach staff in social care as the National Living Wage takes effect (now at £7.50 an hour, it could reach £9 by 2020).
However, it is not clear whether this mini-revival in fees will be enough to restore stability or to reduce vacancy rates and staff turnover. These types of systemic problems suggest that any real improvement in social care at the end of life will require reform of social care – particularly its funding – as a whole. The planned green paper on social care – due this summer – will therefore offer a key opportunity to create a sustainable funding basis for the future. The challenges of reform have deterred previous governments from implementing meaningful change but we must hope that long-overdue reform is now genuinely on the political agenda.
This article appears in the February 2018 'End-of-life care' issue of Commentary.