95% of End-of-Life Care Comes from Carers and Family

The National End of Life Care Coalition (NEoLCC) launches a new report today that reveals how the vast majority of end-of-life care, bereavement support and caregiving is provided outside of the healthcare system. This leaves an invisible majority who are often forgotten and rarely included in policy decisions on end-of-life care.

The report reveals that providing support to people with life-limiting conditions in their local communities would result in significant savings to current spending. It also highlights the extraordinary range of services available, from end-of-life doulas to bereavement support, that millions of people are missing out on because they don’t know how to find them.

The government’s own Neighbourhood Health Framework for England aims to reduce non-elective admissions and bed days of one day or more by 10% for people at the end of life. This could save the NHS up to £790 million per year. Yet current policy remains stubbornly focused on healthcare rather than community-based support.

How to transform end-of-life care and support for carers without additional costs

Rather than calling for new funding for end-of-life and bereavement support, the NEoLCC argues that making better use of existing funding would dramatically reduce hospital admissions and result in people being able to live with dignity within their own communities. This could have a huge impact on the urgent plans that Health Secretary, Yvette Cooper, has asked the NHS to draw up to end ‘corridor care’ for children and vulnerable people.

The report finds that people don’t just need support with their immediate medical needs at the end of life. They need financial advice, emotional support, housing and administration information, help with planning funerals, and ongoing support through the process of bereavement.

Much of this support is already widely available… if people can find it. There are countless free services that already exist both nationwide and locally that can provide ongoing support to people dealing with life-limiting conditions and loss.

The NEoLCC is calling for an overhaul of the current system, including:

1. Creating a one-stop resource for joined-up end-of-life support at all levels – from nationally to locally – to help people in their communities wherever they live.
2. Creating an inclusive National End-of-Life Policy Commission. This should unite the social, public health, and community care sectors so everyone has equal representation.

Co-Chair of the National End of Life Care Coalition, Professor Allan Kellehear OBE, says: “The end-of-life care that we provide as a nation is largely invisible. This report aims to make the invisible visible once again. We want to draw attention to the people who provide the majority of end-of-life care and bereavement support and for the often taken-for-granted services within our communities to be included in future national end-of-life policy”.

“End-of-life care is at a national crossroads. By recognising the scale and scope of end-of-life care in our country, we can begin to restore the inclusive balance needed to develop a fair and equitable national policy for all.”

The impact of end-of-life care

• One in ten people are directly affected by the death of someone dear to them every year – while millions more are providing ongoing support to someone nearing the end of their life.
• There are 5.86 million unpaid carers in the UK that we know of according to the latest census, while 1.7 million people provide over 50 hours of unpaid care every week.
• Bereavement costs the UK economy at £23 billion (with the potential to reach as high as £49 billion) each year in lost productivity and tax revenues. Grieving employees who are unable to work at their normal capacity account for the vast majority of this cost, which also costs the UK Treasury for an estimated £8 billion to £18 billion annually in lost taxes and increased strain on NHS healthcare services.
• End-of-life care and support affects everyone from those directly affected to people dealing with grief after bereavement. Prime minister Andy Burnham has spoken about his father’s dementia and his commitment to social care reform.
• The impact of the support provided by people who care for those with life-limiting conditions is profound. Nicole Kidman has spoken about how she is training to be an end-of-life (non-medical) doula, after the death of her mother. Natalie Cassidy has also spoken movingly of her time supporting her dying father and has since retrained as a carer.