Charity Calls For Urgent Action To Resolve Gaps In Out Of Hours Palliative Care
Marie Curie, the UK’s leading end of life charity, is urgently calling on the government to make palliative and end of life care accessible 24/7 following the publication of a new report.
New research released today by Marie Curie has identified significant gaps in out of hours palliative care for people at the end of life across England.
Freedom of Information requests submitted to all 42 Integrated Care Boards (ICBs) in England revealed that only seven have a 24/7, single point of access to palliative care advice line – despite this being recommended as a minimum service requirement by NICE and the Department of Health for nearly two decades.
In addition, 18% of the advice lines were found to be only available for health care professionals and not for patients and families. In some areas, a designated phone line was only available to patients already known to palliative care services.
Alongside calls for palliative and end of life care to be recognised as a vital part of the new NHS 10 Year Health Plan the Government will publish in June, Marie Curie is also calling for a commitment to a create a universal gateway to 24/7 palliative and end of life care advice and support across England via NHS 111.
Toby North, Marie Curie, Head of Public Affairs said:
“Terminal illness does not respect the clock. We must stop this over reliance on ambulances, A&E and emergency hospital admissions to care for people at the end of life, particularly out of hours. It is resulting in large numbers of people entering a crisis in their final chapter, which is deeply distressing for patients and families, and extremely expensive for the NHS.
“By ensuring that these essential palliative and end of life care services are available using one, easily available phone line, like NHS 111 we can help to prevent people with a terminal illness entering a crisis at the end of their lives that is deeply distressing for them and their families, and expensive for the NHS.”
Special Educational Needs teacher, Jo Hynan from Leicestershire, struggled to secure nighttime care for her husband Mat last year. Her story inspired the title of the report:
“I’d be on the end of a phone, waiting for somebody to answer or call back. Unfortunately, on a couple occasions I had no one call me back at all, so on those nights I had to call 999 for a paramedic to come to the home.
“During the day, the support was outstanding because I would call the community nurses and the palliative nurses and they would always call me straight back.
“The night times were so different and frightening. Every night I used to be thinking what might happen tonight, will Mat have another seizure? Will he be in so much pain again? Will they call me back if I need support? How long will it take for help to arrive?”
The report also found that only two out of the 42 ICBs in England have an Urgent Community Response service available 24/7 across their entire catchment area.
Urgent Community Response services were introduced in 2022 – with ICBs required to provide a consistent service over 12 hours (usually 8am-8pm), seven days a week across their full geography. While the 12-hour coverage window is the minimum requirement, the NHS England guidance notes operating hours should be extended where demand necessitates.
These services are seeing consistently high levels of referrals due to patients having end of life care needs. But as this new report by Marie Curie reveals, these services are not routinely available on a 24/7 basis.
Marie Curie is campaigning to fix end of life care – find out more here.
