The 2008 end of life care strategy allocated £286m to primary care trusts. Lynne Greenwood looks at some of the innovations and improvements being made with the cash

Primary care trusts face the Department of Health’s deadline this month for providing details of innovations and improvements they have introduced in end of life care.

58% - Proportion of deaths in England and Wales in 2008 which occurred in NHS hospitals

17% - Expected rise by 2030 in proportion of deaths in England and Wales which occur in NHS hospitals

The DH wants to know how the £286m allocated - but not ringfenced - is being invested in services to support its first end of life care strategy published in July 2008. The results will be made known this summer.

Just over half a million people died in England and Wales in 2008, around 58 per cent of deaths occurring in NHS hospitals. The figure is set to rise by 17 per cent by 2030.

Service improvements being piloted or already introduced include a tool to manage the care of patients with an uncertain prognosis through to facilities for newly bereaved relatives and carers.

Better personalised care and treatment for patients whose recovery is uncertain is the aim of a tool developed by the Modernisation Initiative End of Life Care Programme in Lambeth and Southwark in London.

Designed to enable proactive end of life care alongside active medical management for patients with an uncertain prognosis, the “care bundle” allows time for medical planning, discussions with patient and family, planning for preferences and more timely referrals.

Named AMBER - assessment, management, best practice, engagement for recovery - the care bundle was developed in partnership with clinical specialists and patient and carer groups and funded by Guy’s and St Thomas’ Charity.

Director of the three year programme Jayne Chidgey-Clark says patients and carers were clear that one of the most important issues was knowing death was a possibility.

“When you have an uncertain prognosis, patients can maintain hope but prepare for a different outcome,” says Dr Chidgey-Clark. “For clinicians, it’s about providing a framework supported by skills and knowledge to deliver exceptional care for patients whose outcome is uncertain.”

Fewer complaints

Although this is not a cost driven project, she says the handling of an expected reduced number of complaints as families are more involved in decision making may counterbalance any possible education and training costs.

Southend University Hospital Foundation Trust, where a new bereavement suite, part funded by a £30,000 DH grant, now provides the newly bereaved with a calming and dignified environment and a more efficient and appropriate service, also believes the service may eventually reduce complaints.

After participation in the King’s Fund’s Enhancing the Healing Environment programme, which enables clinical staff to review the impact of the environment on the delivery of care, a dedicated team planned how to improve the service for families and carers.

As well as detailed discussions with the architect on the suite’s design, the trust consulted with Southend-on-Sea Borough Council on the provision of a registrar on site to prevent relatives having to make a separate visit to register deaths.

Southend University Hospital palliative care team services manager Wendy Warner says: “This has been a very challenging project but one which still prompted positive feedback even during difficult times and early teething problems. Now we are receiving absolutely fantastic feedback from relatives who really appreciate both the environment and the service we offer.”

Bereavement suite

The new suite is close to a main entrance and to dedicated parking for visitors requiring bereavement services.

It has a private and peaceful waiting area and offers access to immediate information and the chance to book a next working day appointment to see the bereavement counsellor, collect personal belongings, register the death and learn about any other relevant services.

Ms Warner makes it clear that the new service is not just about a new bereavement suite. “A big culture change was needed to achieve this,” she says.

“The project led to a major review of the care of the dying and challenged traditions embedded in old facilities.”

Processes including accessing notes from the wards and a review of the way admin was handled and the hospital is now looking to establish a dedicated administration service to deal with deaths.

The partnership established with the local authority is now ongoing and aims to help the trust to develop links with the local community.

Delivering an effective service

  • Focused staff training and development in the ward environment
  • Early clinical engagement to improve the understanding of the new care bundle
  • Case note reviews by specialists from different areas to inform thinking and to identify important issues
  • Keep the commitment to make the end of life care experience as good as possible
  • Ensure changes are service led - bring the right people round the table after they have done their homework
  • Be clear about your objectives and keep detailed accounts of what has been agreed