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.
This pamphlet examines how people in the UK die and consequently how pallative care needs to change and be improved.