The UK Government is poised to announce that providing care for dying people will, for the first time, be an explicit legal requirement for health commissioners throughout England.
End-of-life charities have welcomed the news, saying it is a key milestone in end-of-life care.
One of the charities, Marie Curie, has released new data alongside the announcement showing that around 215,000 people a year currently miss out on end-of-life care and without intervention this could rise to 300,000 in under 20 years.
The call for this change has been spearheaded by Baroness Ilora Finlay and is supported by Marie Curie, Hospice UK, Sue Ryder, Together for Short Lives and Alzheimer’s Society. The change in law is set to be cemented through a Government backed amendment to the Health and Care Bill in the House of Lords.
Baroness Ilora Finlay of Llandaff said:
“This change is incredibly important. For the first time, the NHS will be required to make sure that there are services to meet the palliative care needs of everyone for whom they have responsibility in an area. People need help early, when they need it, seven days a week – disease does not respect the clock or the calendar.”
Joanne Aitken (aged 45) from Cumbria cared for her mother, Margaret, before she died in March 2021 from bladder cancer. After her diagnosis Joanne struggled to get the right care for her mother and has since campaigned alongside the charities for everyone’s right to end-of-life care. Joanne said:
“We didn’t get any help at all really. There was nobody helping with the pain. My mam wanted to die because she was in so much pain. I know deep down my she didn’t want to die, it’s just she was in so much pain. I found myself wanting it for her.
“It hurts me to think about the care mam missed out on but today’s news is good as it hopefully means no one will have to endure the suffering we did.”
Matthew Reed, Chief Executive of Marie Curie, said:
“If you need palliative and end-of-life care today, the chances of you getting the pain relief, symptom control and support for your family that you need depend largely on where you live, your ethnicity, gender and on what condition you have. This is wrong.
“We welcome the news coming out of the Department of Health and Social Care. The impact of this legal requirement to provide appropriate care to dying people could be transformative – it is one of the biggest developments in end-of-life care since the inception of the NHS. This change has the potential to end the current postcode lottery and make end-of-life care fair for all.
“However, our campaigning will continue to ensure that the new integrated care boards are taking the change seriously and ensuring palliative care services are delivered.”
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About Marie Curie
Marie Curie is the UK’s leading end of life charity. The charity provides essential frontline nursing and hospice care for people with any terminal illness, a free support line and a wealth of information and support on all aspects of dying, death and bereavement. It is the largest charity funder of palliative and end of life care research in the UK. Marie Curie is committed to sharing its expertise to improve quality of care and ensuring that everyone has a good end of life experience. Marie Curie is calling for recognition and sustainable funding of end of life care and bereavement support.
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Data breakdown
Marie Curie has taken the 2019 (last full year pre-Covid) ONS mortality data for England/Wales (215, 521) and:
- Applied an estimate of the number of people who died with a palliative care need (88% of deaths, based on upper-mid range estimate here that 87-89.5% of people who die could benefit from palliative care/have a palliative care need need)
- Applied an estimate of people who received palliative care (47.4% of deaths, based on a Sue Ryder analysis of NHS Digital/Public Health England QOF data for 2018/19 quoted here)
- Subtracted the estimated figure of those who receive palliative care from the estimate of those who need palliative care to come up with an estimate of unmet need for 2019.
Marie Curie has then modelled three scenarios for England/Wales based on mortality projections for 2030 and 2040 (ONS data quoted by the academics Etkind and Bone et al in this paper) and applied three scenarios to that:
- Scenario 1: Palliative care need stays constant at 88% of deaths and palliative care received stays constant at 47.4% of deaths (i.e. palliative care capacity rises proportionally to growth in mortality; mid-range scenario)
- Scenario 2: Palliative care need stays constant at 88% of deaths, but palliative care received stays at the 2019 level throughout (i.e. palliative care capacity does not rise despite growth in mortality; worst-case scenario)
- Scenario 3: Palliative care need stays constant at 88% of deaths, but palliative care received rises proportionally by 2030 from 47.4% of deaths to 66% of deaths (i.e. palliative care capacity rises disproportionately to growth in mortality; rise to 66% is based on Etkind and Bone analysis of the upward trend in palliative care received since 2010, quoted on p.6 of the above Sue Ryder paper)
In each of the above scenarios this model produces a projected number for palliative care need, palliative care received and therefore unmet need, for 2030 and 2040. We have then worked out the growth (for scenarios 1-2) or fall (for scenario 3) in unmet need for palliative care between 2019 and 2030, and between 2019 and 2040:
| Scenario | Unmet need for PEOLC by 2030 | Growth/fall in unmet need 2019-2030 | Unmet need for PEOLC by 2040 | Growth/fall in unmet need 2019-2040 |
| Scenario 1 (mid) | 221988 | 6466 | 255236 | 39714 |
| Scenario 2 (worst) | 229537 | 14016 | 301601 | 86080 |
| Scenario 3 (best) | 120289 | -95232 | 138305 | -77216
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