"Everyone deserves a real choice in their end of life care..."

Personalisation – informed choice and control over the services one receives – has been the cornerstone of health and care innovation for many years. The right to choose continues to dictate the direction of system reform, with the government committed to delivering personal budgets for all care users.

But the reach of personalisation has not fully extended to end of life care, which can often be characterised by a lack of choice and – at worst – an impersonal and institutional experience. In particular, the service journeys towards the end of life through the health and care systems are often confused and disjointed.

Against this background, Demos is exploring the possibility of truly personalised end of life care. The first step will be to ensure that people’s journeys through the health and social care systems, and the transitions between different settings, are constructed in a way that reflects personal values concerning death, involving maximum choice and control for care users and their families.

The project aims to address the current barriers to joint working between services, as well as identifying those groups most at risk of falling through gaps where links are weakest. A key aspect will be investigating how the existing plethora of funding streams - such as the possibility of free social care at the end of life, continuing health care (CHC), palliative per person funding and intermediate care - can be streamlined and integrated to create sustainable pathways across the piece.

This project will examine how services might be joined up more intuitively, to deliver effective journeys that respect individuals’ needs for safety, dignity and choice in dying.

Our research will involve focus groups with service users themselves and with their families, to gain a meaningful insight into individual experiences of service transitions as people approach the end of life. Through consultation with academic experts, commissioners, policy makers and practitioners, we will locate weak links – common points of delay and disruption that contribute to poor outcomes for service users.

This will culminate in a half-day expert conference where stakeholders from different field are brought together to consider our findings and start with a ‘blank slate’ to create a new template for an ideal, person-centred end of life care service journey.

The project is supported by Sue Ryder.

Dying for Change
Jake Garber, Charles Leadbeater
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This pamphlet examines how people in the UK die and consequently how pallative care needs to change and be improved.

Ways and Means
Claudia Wood, Ally Paget
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This report highlights inequalities at the end of life and places an emphasis on training, communication and integration across health and social care.

Jun 19

Known unknowns

Death is life’s one absolute certainty, writes Ally Paget, so why so much uncertainty in care at the end of life?

Mar 15

It comes equally to us all

Ally Paget argues that the integration of health and social care is the most urgent aspect of yesterday’s Lords report into ageing.

Apr 24

Warning of 'unacceptable' lottery in care of the dying

Citing Demos research from last year, the Telegraph reports on the chief inspector of hospitals' claim that there are 'huge inequalities' in treatment of the dying in the UK.

Jun 19

Call to stop 'lottery' of end-of-life care

Demos's report on end of life care is the focal point of a Telegraph article on health and social care.

Jun 19

Social workers should be co-ordinators of end-of-life care, says report

Community Care focuses on Demos's recommendation to improve integration in end of life care.