Two years on from the end-of-life care strategy, its aim of a dignified death for all in a place of their choosing is being stymied by a lack of social care involvement. Vern Pitt reports
About one million people have died in England since the publication of the end-of-life care strategy exactly two years ago. Most died in hospital.
This may be part of the reason why a government document issued last week said many social care staff did not see end-of-life care as part of their remit despite the sector being central to achieving the strategy’s aims.
These include identifying people who are nearing the end of their lives, assessing their needs holistically and ensuring they have a care plan that reflects their wishes, including whether they want to die at home.
“There’s a culture change needed,” says Tes Smith, joint social care lead at the National End of Life Care Programme (NEoLCP), whose role is to help local agencies implement the strategy and whose framework for social care at the end of life was published last week.
This culture change is one that both health and social care will have to make, as the framework identifies a low awareness of social care’s role in end-of-life care among both health and social care professionals.
Jo Webber, deputy policy director at the NHS Confederation, says part of the reason for social care’s lack of engagement is the barriers to people accessing services, specifically means-testing.
“If you have someone who needs an end-of-life care service, they have to get into the system in a way they don’t with the health system,” says Webber. She says people need to be on social services’ books before they need end-of-life care so immediate action can be taken when they do.
Webber also highlights the need for people with end-of-life care needs to have a joint health and social care assessment – a clear objective of the strategy – particularly in helping keep people in their own homes.
“The NHS is not that good at making sure people can have care packages in their own home.” Social workers are much better equipped to set these up, she says.
However, the NEoLCP framework says many people do “not receive ongoing holistic assessment of their needs”, with the role of social care in this process often “narrowly understood” by health staff.
Councils did not receive money to implement the strategy, with £286m in non-ring-fenced funding going to PCTs. Earlier this year the National Council for Palliative Care found 35% of PCTs could not account for their share of the £88m for 2009-10. But there are also concerns that, to the extent PCTs are using the funding, it is not reaching social care services.
“Local hospices find that PCT commissioners don’t fully understand the spectrum of services that hospices are providing because a lot of what they do is social care,” says Jonathan Ellis, director of public policy and parliamentary affairs at Help the Hospices.
Des Kelly, executive director of the National Care Forum, adds that PCT commissioners rarely think of care homes as an option when devising care packages unless they provide nursing care, fearing it will add costs to the NHS.
“PCT commissioners feel it will bring a burden onto primary care if [residential] care homes are coping with people with higher needs, but it has always been that care homes try to go on supporting people into the last days of life,” he recalls.
Indeed, Kelly says savings can be made because care homes are still cheaper than hospital admissions. Webber suggests that government plans to shift commissioning responsibility for health from PCTs to GPs could help forge joint commissioning in end-of-life care, adding: “GPs get frustrated at the lack of joined-up end-of-life care.”
Meanwhile, NEoLCP’s social care framework suggests self-directed care could help overcome barriers between health and social care. It suggests testing dedicated end-of-life care budgets, combining health and social care funds, through which users and carers, assisted by social workers, can have choice and control over their support.
The framework also calls for a strengthening of the role of specialist palliative care social workers, who tend to be based in hospices or hospital palliative care units. It says they can provide credible local leadership, educating and supporting social care staff in providing end-of-life care in the community. However, Smith warns: “Their expertise is not being passed through to the community social work teams.”
The framework also says that current provision of palliative social work is patchy and there is a problem with staff resigning or retiring and vacancies not being filled.
Improving social care’s contribution to end-of-life care will require collaboration, with the NEoLCP calling on organisations including the Association of Directors of Adult Social Services and the Association of Palliative Care Social Workers to help implement its recommendations.
However, the NEoLCP is optimistic, saying the framework is “only the start of a process of change that will gather momentum as the social care workforce rises to the challenge of supporting people to live, and also to die, well”.
Read about how a community matron in Oxfordshire is helping more people die at home
Essex Council, April Lawlor, strategic commissioner, Essex
With a population of 1.4 million, five primary care trusts, a county council, two unitary authorities, two mental health trusts and five acute hospital trusts, implementing the end-of-life care strategy is complex.
But the various agencies have come together to improve care for people who are dying, with the county council taking a leading role in developing each of the five PCTs’ end-of-life care strategies, says strategic commissioner April Lawlor.
Essex has found existing bi-monthly multi-agency forums for end-of-life care invaluable in sharing good practice and setting the strategic direction for services, says Lawlor. These forums initially worked on cancer care but have expanded to include other conditions.
The same multi-agency approach, which includes the voluntary sector, has been applied in the south west of the county to pilot a hospice-at-home service, run by St Luke’s Hospice. It is funded by Essex and Thurrock councils, and by the local PCT, and includes a social care service designed to help people approaching the end of their lives stay in their own homes. Lawlor says the hospice-at-home has helped decrease hospital admissions and provide greater choice for users. The county council is looking to replicate it county-wide.
Working with health partners has also opened up training avenues for social care staff. The strategic health authority is funding training in advanced communication in dying issues for frontline staff across the county. “It probably wouldn’t have been open to council staff because it is funded by the SHA but provision for social care staff was written into the bid from day one. There is no point training all your nursing staff if someone’s primary point of contact is their social worker,” says Lawlor.
Lawlor says the fact that PCTs, not councils, were given government funding to implement the end-of-life care strategy may partly explain the greater level of buy-in from the NHS.
But she says it’s really all about attitude: “We all have a part to play and we took the view that we have a duty to work together and put the service user at the centre of this process.”