"Urgent action" needed to resolve dangerous gaps in out of hours palliative care in England
Press release published
New research maps out significant gaps in out of hours care available for people at the end of life across England
Just 2 of the 42 Integrated Care Boards (ICB) in England have a 24/7 Urgent Community Response service running across their entire catchment
Only 7 of the 42 Integrated Care Boards (ICB) in England have a dedicated 24/7 single point of access phoneline for palliative care – despite this being recommended as a minimum service requirement by NICE and DHSC for nearly two decades
Recommendations include adding a new 'palliative care option' to NHS 111 and prioritising palliative care in the new 10 Year Health Plan
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.
-ENDS -
Notes to editor
For more information please contact: the Marie Curie Press Office: media@mariecurie.org.uk / 0845 073 8699.
Notes to Editors
Full report: "The night times are frightening": gaps in 24/7 community care for people at the end of life: [will be available on the Marie Curie website once the embargo lifts]
For reference:
Scotland has the NHS 24 phone line available for healthcare needs, though at the moment this doesn't include around-the-clock specialist palliative advice across Scotland. Northern Ireland has no consistent out-of-hours end of life care provisions available at present. In Wales palliative and end of life care support has been available via NHS 111 since 2023.
Useful reports:
https://www.mariecurie.org.uk/globalassets/media/documents/policy/beol-reports-2022/better-end-of-life-report-2022.pdf
About Marie Curie:
Marie Curie is the UK's leading end of life charity.
The charity provides expert end of life care for people with any illness they are likely to die from, and support for their family and friends, in our hospices and where they live. It is the largest charity funder of palliative and end of life care research in the UK, and campaigns to ensure everyone has a good end of life experience. Whatever the illness, we're with you to the end.
If you're living with a terminal illness or have been affected by dying, death and bereavement, Marie Curie can help. Visit mariecurie.org.uk or call the free Marie Curie Support Line on 0800 090 2309 or email support@mariecurie.org.uk
Marie Curie have partnered with the UK Gas Distribution Networks to help give people with a terminal illness the support they need to cope with energy costs. Dedicated Energy Support Officers can provide information on support available from energy suppliers, grants and energy efficient updates. Visit www.mariecurie.org.uk/energy for more information.