We believe that everyone deserves gold standard care at the end of their lives and that no one should be left to die without the care, support, and dignity they deserve. We all have a role to play in this, most notably in social care because end of life care is everyone’s business. In our ageing population, dementia is now the leading cause of death, along with frailty and multi-morbidities of old age, and most care for people with dementia is given by care homes and domiciliary care providers. (See Fig 1 below)
There are differing ways of dying and varied approximations of the trajectories of illness, but most of the ageing population now follow a pattern of gradual decline, with dementia, frailty and comorbidities.
Most hands-on care for people in the last year of life is given by frontline generalist health and social care providers, often where available, with support from palliative care specialists plus essential family, carer and community support underpinning it all. (See Fig 2 below.)
Care professionals therefore have an increasingly vital role to play to ensure that more people receive quality end of life care. However, despite evidence of the benefit of training the social care workforce, this large and invaluable workforce is often unrecognised and unsupported to provide such vital care for people living out their final years of life.
At The Gold Standards Framework Centre (GSF) charity we are committed to improving care for people in the final years of life in any setting, given by any care provider. We recently celebrated our 25th anniversary as the UK’s leading provider of End of Life Care (EOLC) training for generalist front-line staff. GSF’s well-recognised EOLC training and accreditation in EOLC particularly focuses on enabling the social care workforce and is the only training programme to have established objective accreditation. Since this was introduced in 2008 thousands of care professionals have completed the process and many care homes are now being accredited for the sixth time, over 18 years since originally trained.
End of life care – a national priority
At our landmark 25th anniversary event, we reflected on things past, present and also future, celebrating a quarter century of success whilst also affirming the huge need for this work in the future. We feel more needs to be done to support our hardworking health and care teams to meet challenges ahead. The importance of our workforce, especially in social care, is often unrecognised by Government; yet modest investment could enhance, empower and upskill the three million front-line health and care workforce (1.2 million NHS and 1.8 million social care) to provide quality care for many more people in their last years of life.
We also commissioned a survey reflecting shifting public trends1. Most respondents said they would prefer to die at home or in a care home, reflecting other national surveys. There was also a concerning lack of public awareness of end of life care, with half those surveyed admitting they had scant knowledge of the care and support available and almost two thirds saying they would appreciate a discussion with professionals about available options. But most significantly, two thirds (67%) of those surveyed backed a call for the Government to provide more resources and training for EOLC as a national priority.
A call to Government
Partnering with Care England and other leading health and social care bodies we developed a coalition of national organisations committed to enabling generalist front-line workforce to speak with one voice, known as the Coalition of Frontline Care. It will call on Government to increase resources for training and support for the generalist workforce, who provide the vast majority of hands-on care for people in the last years of life.
Greater Government investment in the health and care workforce could create three areas of positive outcomes – for individuals and families, the workforce and public finances. More people in their final years would receive better quality care, face fewer crisis hospital admissions, and have a better chance of being able to die at home in their own bed, thereby reducing the level of distress for their families. A stronger, more resilient workforce with improved morale and greater job satisfaction would help temper the current workforce crisis. Also, if the health and care systems worked better together it would significantly reduce the number of hospitalisations, saving money, while freeing up access to beds and reducing waiting times – it’s a potential ‘win-win-win’ for everyone.
A third of the NHS budget is spent on people in their last year of life and, if current trends continue, the number of deaths in England and Wales is predicted to rise by 25% by 2040, with home/care home death rates set to almost double2. Without appropriate support this is in danger of reverting to crisis over-hospitalisation and poor-quality home care3. Add to this the fact that 30% of hospital beds are filled with people in the last year of life, many of whom will be among the 80% of care home residents who are in the last year of life and who, on average, will endure three unplanned admissions, almost half of which could be avoided4.
Delivering excellence with GSF
There is also clear evidence that more people could be enabled to die at home with better staff training and stronger support5. We know this is possible to achieve, due to the experience of our frontrunner GSF accredited teams of health and social care professionals. Over 25 years, GSF has trained over 5,000 teams, about half a million staff and accredited over 2,000 teams, enabling millions of people to benefit from more proactive, personalised care.
Those teams talk about the transformational effect GSF has had on them and the people they’re caring for. Rekha Govindan, a Registered Manager at Chegworth Nursing Home, Sutton, said, ‘We are grateful to GSF for the structured framework, which has enabled Chegworth Nursing Home to be able to provide high-quality palliative care to our residents. We can distinguish between the times before and after our involvement with GSF. We truly believe that GSF has made a big difference in the entire palliative care society.’
GSF is a tried and tested, systematic, evidence-based programme optimising care for people in their final years of life, whatever their condition, wherever they are. GSF teaches the core system-based skills and competencies to teams, including early recognition of decline, enabling open and honest advance care planning conversations, and proactive future planning to enable tailored care. This supports more people to live well before they die and to die well in the place and manner of their choosing. Teams can complete the training either in-person or remotely. While the GSF training is in-depth and robust, it’s also manageable and cost-effective for teams, with the cost of training and accreditation for a whole care home, agency or team equivalent to one to two weeks of a resident’s stay or two nights in hospital.
The investment in training and support for the generalist front-line workforce could enable
the provision of proactive, personalised, well-co-ordinated end of life care for millions more. It would complement the increased access to specialist palliative care mandated in the Health and Care Act 2022, improving appropriate referrals to palliative care services. It would reap significant system-wide benefits for all, but notably enhance the social care workforce, often omitted from policy developments, as in NHS England’s Long Term Workforce Plan.
Without concerted action by Government to support high-quality end of life care, we risk the under-valuing and depletion of our precious over-stretched health and social care workforce. This in turn will lead to over-hospitalisation causing pressures throughout the health service and reduced access for those acutely unwell patients, as well as delayed discharges and increased waiting times with excessive waste of public resources. But above all, we risk a poor experience of care for individuals in the later stages of their life and their families, and fewer people being able to die well where they choose.
Strengthening the system
Our workforce is our strength. The social care workforce is committed, motivated and able to meet the challenges of the future if they receive good training, enablement and support. Our challenge now is to alert Government to the need to upskill the front-line workforce, to create a health and care system that works together, to provide better care, ‘gold standard’ care, for all in their final years of life.
Coalition of Frontline Care: Letter and Press release Gold Standard Framework – Coalition of Frontline Care (goldstandardsframework.org.uk)
25th Anniversary: GSF is celebrating 25 years this year. See our website for more information: www.goldstandardsframework.org.uk/25-years-of-gsf. Here you will be able to view a testimonial video (https://vimeo.com/835571706), a summary video of the last 25 years of GSF (https://vimeo.com/837596505) and an online event summarising its history, impact showcasing front-line GSF Accredited teams and discussing future EOLC needs with a panel of experts (https://vimeo.com/838992771).
Contact us if you share this vision or would like to know more about GSF. You can email us at [email protected], or visit www.goldstandardsframework.org.uk for more information. You can also search for a GSF Accredited care home near you here:
www.goldstandardsframework.org.uk/accredited-organisations and view GSF International work here: www.gsfinternational.org.uk. GSF Awards Conference: And if you want to know more about the GSF Accreditation Awards on 29th September, visit
www.goldstandardsframework.org.uk/gsf-awards-2023 . You can also follow us on X (formally Twitter): @gsfcentre or on LinkedIn.
References
- June 2023 Survation Poll –on behalf of Gold Standards Framework and Blue Lozenge
- ONS Jan 12 2022
- Etkind et al. BMC Medicine (2017) 15:102 DOI 10.1186/s12916-017-0860-2
- https://www.health.org.uk/publications/reports/emergency-admissions-to-hospital-from-care-homes
- https://www.nao.org.uk/reports/end%20of%20life-care/