'Long way to go' for high quality end of life care

A recent BMJ study has shown that clinical commissioning groups are not equipped to achieve the standards set in 2016 for end of life care. 

NHS England recently called on its Twitter followers to share their views about end of life care and highlighted best practice examples in a bid to show progress on the government’s six commitments to end of life care.

Honest discussion between care professionals and dying people is one of the six commitments
Picture: iStock

The goal of the six commitments, published in 2016, is to eliminate variation across healthcare systems by 2020; they are a response to an independent review on choice in end of life care chaired by the chief executive of the National Council for Palliative Care (NCPC).

29 out of 81

clinical commissioning group respondents provided information about the number of patients with palliative care needs in their population

(Source: Commissioning of specialist palliative care services in England: BMJ Supportive and Palliative Care)

The commitments include personalised care plans for all and honest discussions between care professionals and dying people. Former health minister Ben Gummer pledged that new measures would be developed to ensure local health and care leaders meet the standards expected.

But a recent study published in BMJ Supportive and Palliative Care revealed that the provision of palliative care across England is inconsistent and clinical commissioning groups (CCGs) are not equipped to provide adequate services.


One of the study authors, Baroness Ilora Finlay, professor of palliative medicine and chair of the NCPC’s trustees, recommended national guidelines to support CCGs to commission end of life care services. 

The study, which used data from Freedom of Information requests, found that 36% of responding CCGs had information about the number of people with palliative care needs in their areas. A similar number had statistics on the annual number of deaths in their localities.

£51.83 to £2,329

the varying budgets CCGs had per patient per year for palliative care services

(Source: Commissioning of specialist palliative care services in England: BMJ Supportive and Palliative Care)

Early analysis by the NCPC of Sustainability and Transformation Plans across England, which are supposed to be designed to include end of life care, showed that more than half made no, or fleeting, reference to it and just 16% had end of life care as a priority.

'Long way to go'

Hospice UK director of policy and advocacy Jonathan Ellis says the evidence shows there is still a long way to go to make sure that end of life care gets the attention it deserves in all parts of the country, particularly to improve commissioning.

‘Strong, reciprocal relationships between CCGs and local care providers, such as hospices, can help achieve positive change and increase awareness about the needs of people at the end of life,’ he says.

The charity has been commissioned by NHS England to undertake a study to understand success factors in hospice-led interventions in end of life care. It will publish a report on the findings later this year, along with practical guidance for commissioners, providers and hospices.

Running alongside the publication of the statistics, Skills for Health, Health Education England and Skills for Care have published an end of life care core skills education and training framework. Its aim is to ensure consistency in learning and skills that will ultimately result in a better trained workforce providing a higher standard of care.

Dementia support workers for care homes and end of life

NHS Walsall clinical commissioning group (CCG) has helped to facilitate an end of life service for people with dementia living in care homes in Walsall. It is a collaboration between Pathways 4 Life (a partnership between the Accord Group and Age UK Walsall) and St Giles Hospice.

Two community-based dementia support workers (DSWs) provide specialist evidence-based advice, development sessions and support to care home staff across Walsall. They also work with residents and their families to identify areas for potential improvement. The DSWs host a regular community steering group that is open to care home managers, nursing teams, falls teams and the local ambulance service.

Ongoing evaluation of the service, which started in June last year, shows a number of positive effects including a decrease in unnecessary admissions to hospital and an improvement in continuity of care across the borough by increasing communication between care homes and other relevant services.

NHS Walsall CCG head of older people and dementia Michael Hurt says his years spent working as a nurse and specialising in older people have helped him in the role of commissioner at the CCG. He believes in commissioning appropriate services that promote independence and choice.

Mr Hurt says: ‘Commissioners all share the same problems nationally in that end of life care isn’t always as good as it could be and a lot of people end up in acute hospitals to die that shouldn’t be there. But, as the project with the DSWs shows, there are effective ways to improve.’ 


Skills for Health chief executive John Rogers says: ‘This framework will consolidate, clarify and benchmark the key knowledge and competences staff at all levels need to provide patients and their families with the very best support and care at this vulnerable time.’


CCGs who reported commissioning palliative care education for healthcare professionals

(Source: Commissioning of specialist palliative care services in England: BMJ Supportive and Palliative Care)

But RCN professional lead for long-term conditions and end of life care Amanda Cheesley warns that while the framework is accessible to all: ‘having a framework in and of itself does not ensure the variation in care and skills across the UK will be resolved.

‘Many patients and their families are still experiencing poor care and this can only be addressed by ensuring that organisations and employers commit to providing their staff with the education and skills to feel confident delivering high-quality care to dying people in every setting across the UK. This framework can be part of the process.’

‘Lack of good, consistent data makes end of life care planning harder’: Baroness Ilora Finlay

‘There is a clear need for national guidance and support for clinical commissioning groups about the information they need in order to effectively commission end of life care services,’ Baroness Finlay says.

‘This means implementing part 4 of the national commitment, which says “We will provide commissioners with data, tools and palliative care currencies to help identify palliative care needs in local areas and the best ways to commission services to meet those needs.” I want to know how the government intends to do this.

‘Lack of good, consistent data makes planning harder, and that in turn makes it harder for us all to receive good quality end of life care. We know what to do to care well, but unless the services are commissioned patients will continue to have their needs unmet.’


NHS England’s national clinical director for end of life care, Bee Wee, maintains that international comparisons rate the UK as the best country in the world for end of life care and adds: ‘There is always more to be done to reduce variations across the country, and we continue to work with national partners and charities to develop and disseminate guidance and support for CCGs to support them in ironing out variation, including information for commissioners on specialist level palliative care.’

Further information

End of Life Core Skills Education and Training Framework

Commissioning of specialist palliative care services in England


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