Social care services have undergone an important shift towards personalisation in recent years, giving people a say in the care they receive, rather than offering them a ‘one-size-fits-all’ service.
But despite major strides in this agenda, it does not always extend to care at the end of life. Research shows that 70% of adults would like to be cared for and die in their own home. But the great majority of us still die in hospital, and only two out of 10 are able to remain in their homes for our final days.
This gap between preference and practice is replicated in hospices. 2010 data from the National End of Life Care Intelligence network shows that home and hospices together account for the preferences of at least 89% of people in every region. For those aged 75 plus, there is a large gap between a preference to die in a hospice (41%) and hospice deaths (3%). In almost all regions of the UK, hospital is the least preferred place of death, and yet between half and two-thirds of deaths continue to occur here.
Progress has certainly been made in the last two years, through the hard work of the many agencies operating in this area. But a recent Office for National Statistics (ONS) report shows that some parts of the country have advanced more rapidly than others.
Why is personal choice so difficult to achieve in end of life care?
We believe local authorities have a crucial role to play in this agenda. End of life care has often been regarded as the preserve of the health service, but through their provision of social care and housing, councils also deliver core services in this area. More importantly perhaps, their ‘place-shaping’ responsibilities put them in a position to draw together relevant partners to support better integration, whether they be hospitals, health commissioners, hospices or other voluntary sector organisations.
With this in mind, the Local Government Information Unit (LGiU), working with housing association Home Group, surveyed 91 upper tier councils to ask them about their arrangements for end of life care. Our survey found:
- Six out of 10 respondents thought that their existing end of life care arrangements would not be sufficient in future.
- Four out of 10 thought that Health and Wellbeing Boards should lead on end of life care in future. However, only three out of 10 said that their shadow health and wellbeing boards had identified end of life care as a priority.
- The majority of respondents reported having a plan for end of life care. In just under 40 per cent of cases this was a joint plan between the council and the health service. In 16 per cent of cases the council had their own plan;
- Only a quarter of respondents said that housing departments were engaged with social care on end of life care issues, despite theoften crucial role of housing in supporting quality of life outcomes.
Based on these results and conversations with officers and elected members working in this field, we identified a number of broad challenges and opportunities for local government.
Awareness raising
There is still scope to further raise the overall level of awareness of the end of life care agenda in local authorities. The majority of respondents to our survey had some level of formal responsibility for social care, but around a quarter did not know whether or not they had an end of life care plan and 30 per cent did not know if they had a lead officer for this area of work.
Opportunities for a greater leadership role for local authorities
The results indicated that councils are beginning to take a more prominent role in an area that has previously been primarily led by health. Encouragingly, more than 60 per cent of respondents reported that they plan to develop their role in end of life provision in future. However, around 40 per cent of respondents identified CCGs as the lead partner for end of life care in future, rather than Health and Wellbeing Boards, suggesting that many still regard end of life care as first and foremost an issue for health. Only three out of ten Boards had identified end of life care as a priority.
Relationships between health and social care
While nearly 60 per cent of respondents agreed, or strongly agreed that health works closely with the council on end of life care, ‘poor coordination between health and social care’ was regarded as the top barrier to better end of life care. This may reflect the changing relationships in this area as a result of health and social care reform, and the difficulty of overcoming the challenge of integrating budgets.
Opportunities for greater integration with housing
Less than a quarter of respondents agreed that housing works closely with social care on end of life provision, despite its often pivotal role in quality of life outcomes for people in receipt of care. More work is needed in this area to demonstrate the value of housing in delivering better quality care and financial savings.
There is more work to be done to ensure councils play a central role in supporting high quality, integrated end of life care services. But in areas of the country where this is working, it is already making a vital contribution toour ability to support individuals to reach the end of life with dignity and control.
The LGiU published their report ‘A good death: the role of the local authority in end of life care’, in November 2012. For more information please follow this link.
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