Press Release - September 2023 - Health and social care organisations call on government to overhaul end of life care

A coalition of leading health and social care organisations is calling on the government to tackle failings in the way older people are cared for in their final years of life.

The new Coalition of Frontline Care for People Nearing the End of Life, which includes Care England, the British Geriatrics Society (BGS) and The Gold Standards Framework Centre (GSF), is calling for enhanced core training in end of life care (EOLC) for the UK’s three million generalist frontline health and social care workers. They also want to see a step-change in health and care integration from the new Integrated Care Boards (ICBs) and heightened recognition of end of life care by the regulator CQC.

In an open letter to Secretary of State for Health and Social Care, Rt Hon Steve Barclay MP, and Social Care Minister, Helen Whately MP, they say that existing NHS resources could be better used to transform a vital system of care that is failing those most in need.

Professor Keri Thomas OBE, founder and Chair of GSF, the leading training provider in end of life care for frontline health and care staff, said: “Everyone deserves gold standard care at the end of their life. Most hands-on care for people in their final year of life is given by the frontline generalist workforce, in both health and social care. Therefore, it makes sense to ensure that those giving most care to most people in their final years, in any setting, are well trained in end of life care.”

"The current system, however, is particularly failing vulnerable older people in their final years and the situation will only worsen as the population ages. Patterns of dying are changing too. Healthcare systems must adapt to the age-related conditions causing deaths and long-term illnesses, such as the UK’s biggest killer - dementia, by equipping frontline teams to provide proactive, personalised, coordinated and system-focused care for people in their final years."

"Research shows that given the choice, most people would prefer to die at home or in a care home yet almost half die in hospital. Unless more frontline health and care professionals receive specific end of life training and support, we will see further increases in emergency admissions and hospital deaths, which is not what we or the public want."

The open letter has been signed by the leaders of seven health and care organisations which represent the health and social care workforce providing frontline care to those in the last years of life. These include: the Gold Standards Framework Centre (GSF), Care England, the British Geriatrics Society, the National Care Forum, the Homecare Association, the Association of Retirement Communities Operators (ARCO) and the Community Hospitals Association.

Highlighting the fact that about a third of the NHS budget is currently spent caring for people in the last year of their lives, the coalition say minimal investment would reap considerable rewards and cost-savings, reducing avoidable hospitalisation, cutting waiting times and fulfilling people’s preference to die at home.

Driven by the ageing population, the number of UK deaths is projected to rise by 25% in the next 20 years, with numbers aged over 85 set to double (i).

About 1% of the population (650,000) dies each year, mainly older people (85% over 65). We know that at any one time 30% of hospital patients and about 80% of care home residents are in their final year of life.

Most of these people will require substantial levels of hands-on care, largely provided by an under-recognised frontline health and social care workforce. For many, their decline can be anticipated, and their care proactively planned, yet there is currently little investment in preventative, system-based training for the workforce caring for these people.

About 40% of emergency hospital admissions of care homes residents are considered preventable, and EOLC training such as GSF can dramatically decrease these (ii). 

Many more could be enabled to live well and die well at home with better staff training and stronger support. This would also reduce over-hospitalisation and increasing bed access for others, making economic and practical sense. In particular, this would help with the government’s target of reducing waiting times.

Professor Martin Green OBE, Chief Executive of Care England, said:

“Care for people nearing the end of their life is a major part of delivering good health and care services, and all parts of the system need to make changes in order to deliver good end of life care.”

"The NHS Long Term Workforce Plan (iii) suggests improved recruitment, retention and reform are needed to address the workforce crisis, but it does not adequately address the need for good quality end of life care, and currently excludes the social care workforce. This obvious omission could be remedied in part by a focus on training in this vital area of end of life care for the social care workforce."

"Implementing a policy of enhanced core training in end of life care for all frontline generalist staff in health and social care is essential if we want to reduce suffering for older people in their final years."

"In each individual case there is only one opportunity to get end of life care right. If the government is willing to grasp the nettle on this issue, we can bring about a step-change in care."

A recent survey commissioned by GSF suggests there is widespread public support for proposals outlined in the open letter with two thirds of people (67%) agreeing that the Government should provide more resources and training for end of life care as a national priority (iv).

Read the full letter here: Coalition of Frontline Care for People Nearing the End of Life

Read the August 2024 Letter to Ministers.

References
i. ONS Population and Projections End of Life Care report (2022): Click here 
ii. GSF Accredited Care Homes Survey (2023)
iii. NHS Long Term Workforce Plan (2023) https://www.england.nhs.uk/publication/nhslong-term-workforce-plan/
iv. GSF End of Life Care Survey (2023) https://www.goldstandardsframework.org.uk/25-years-of-gsf