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28 November 2022

End-of-life care inconsistent across the UK

New research has found that terminally ill people are struggling to access essential care at home during evenings and weekends.

780 Palliative Care

Research by King’s College London’s Cicely Saunders Institute, Hull York Medical School at the University of Hull, and the University of Cambridge and funded by Marie Curie, is published in today’s Better End of Life report.

In 78% of the areas surveyed nursing services were not consistently available to dying people overnight at home, despite 75% of the week falling “out-of-hours".

Furthermore, 69% of areas did not provide a 24/7 designated telephone line for people approaching the end of life and their carers, that can connect them quickly and easily to local services.

Of these, 27% of areas had no designated phone line at all, while 42% had only partial coverage out-of-hours. This is despite repeated recommendations to implement this service from The National Institute for Health and Care Excellence (NICE) over the last 10 years.

Accessing vital medicines out-of-hours was also difficult with only 25% of areas having a pharmacy open throughout the night.

Pain and other symptoms can suddenly increase when someone is nearing the end of their life, so fast, responsive care is needed around the clock. Fears about dying without dignity or without their loved ones present can cause further distress.

Gaps in out-of-hours care, the researchers say, can lead to avoidable trips to stretched hospital A&E departments. The researchers found that, over a year, approximately 780,000 out-of-hours visits were made to A&E for people in the last year of life. These visits increase rapidly during the final three months of life, with out-of-hours visits increasing more than visits during standard office hours.

The research also found out-of-hours emergency visits to hospital are higher in areas of social deprivation. Both the charity and researchers say that dying people in deprived areas should not have to rely on emergency hospital departments for the help and care they need.

Better palliative care in the community, including out-of-hours, could play a key role in reducing pressure on emergency services, improving both the quality of life for dying people and protecting precious NHS resource.

Our research uncovers considerable variation in the care and services that are provided in the evening or at weekends across the UK. If these services are not in place, people may have no choice but to go to hospital, even if their preference is to stay at home.

Professor Katherine Sleeman, lead researcher on the Better End of Life programme and Laing Galazka Chair in Palliative Care

She added: “Because we know that demand for palliative and end of life care will increase over the next decade, it is essential that the gaps in services out-of-hours are addressed, so that everyone with advanced illness has access to the right care, whenever and wherever they need it.”

Ruth Driscoll, Marie Curie Associate Director of Policy, and Public Affairs said: “A designated phoneline is considered crucial for out-of-hours care and one of the most valuable services that can be offered to patients and their carers. It would also help prevent avoidable emergency admissions to hospital, which increase pressure on an already stretched NHS.

Professor Fliss Murtagh, Director of the Wolfson Palliative Care Research Centre, from Hull York Medical School at the University of Hull, and one of the researchers working on the Better End of Life programme said: “Throughout the UK, major reliance on district nurses or community nursing teams for out-of-hours palliative and end of life care was evident.”

As a result of the research Marie Curie is recommending that every area of the UK should have a designated 24/7 palliative and end of life care telephone line. This should be staffed by experienced palliative care professionals so that people at the end of life and their carers can get the advice, guidance, and support to access local services and medication that they need rather than having to call 999.

The charity also says that investment must be made to ensure there is a sustainable workforce able to meet the current and future needs of dying people in our ageing population.

To download the full research please go to Mind the gaps: understanding and improving out-of-hours care for people with advanced illness and their informal carers.

In this story

Katherine Sleeman

Laing Galazka Chair in Palliative Care, Honorary Consultant in Palliative Medicine