“I am in control of my care and support” 61
Care and support at the end of life We want people to receive the best possible care at the end of their lives, including a choice over where they die. Integrated palliative care is central to this. The final report of the independent Palliative Care Funding Review in July 2011 set out a series of recommendations to create a fair and transparent funding system for palliative care.63 The Review found the current system, ‘overly complicated, difficult to navigate and not joined-up enough, leading to a lack of fairness and transparency for commissioners, providers and patients. The system is focused on providers and not patients.’ We fully support the Review’s approach and will introduce a new funding system for palliative care in 2015. There has also been strong support for the Review’s recommendation that ‘once a patient reaches the end of life stage, and is put on the end of life locality register, all health and social care should be funded by the state and be free at the point of delivery’. We think there is much merit in providing free health and social care in a fully integrated service at the end of life. We will use the eight palliative care funding pilot sites to collect the vital data and information we need to assess this proposal, and its costs, along with the Review’s other recommendations. A decision on including free social care at the end of life in the new funding system will be informed by the evaluation of the pilots, and an assessment of resource implications and overall affordability. In addition to data and information on the Review’s recommendations, we need to understand the barriers to more integrated care at the end of life, and how we can overcome these. We will be asking some of the pilots to look at this and at potential new models of service design. In recognition of the scale of the task in getting these issues right, we are doubling our investment in these pilots (from £1.8 million to £3.6 million) to ensure we have the information needed for implementation.
In the interim, we want to make improvements to the current experience for people at the end of their lives. Therefore, we will look at how the guidance for local authorities and the NHS on intermediate care can be updated to encourage better transitions out of hospital at the end of life, and to help more people to die at home, or in a care home, should they wish to do so. We are also implementing new approaches to improve the coordination, and quality, of care for people approaching the end of life. We have piloted Electronic Palliative Care Coordination Systems (EPaCCS – formerly known as Locality Registers) in eight localities. EPaCCS are intended to provide instant electronic access to key information about patientsat the end of life to all health professionals with a need to see it. Extensive work is under way on a wider implementation, including exploring the integration of these systems with social care providers.