Our latest research shows almost 1 in 3 people don’t get the end of life care and support they need. How did we get to this statistic, and what does it mean?
Good end of life care helps people stay as comfortable and supported as possible in the time they have left. It involves managing pain and symptoms, providing emotional and spiritual support, and making sure services work smoothly around the person and what matters most to them.
Yet despite this, too many people in the UK still die without adequate help or timely access to the joined-up care and support they need.
Our latest research shows that, distressingly, almost 1 in 3 people don’t get the end of life care and support they need.
Understanding the scale of the problem
Only by recognising how widespread the issue is can we begin to solve it and ensure everyone receives the compassionate, person‑centred care they deserve.
Reliable data helps charities like Marie Curie, health systems and governments focus resources where they are most needed, identify inequities, and understand which groups are most affected. It’s vital we have a clear picture of just how many people are missing out – and this begins with clear definitions.
What do we mean by ‘unmet need’ in palliative care?
Unmet need is challenging to define because every person’s situation is different. Symptoms, concerns and priorities vary, and care needs can be complex.
To create a meaningful definition, researchers on the Marie Curie-commissioned DueCare project: Defining and Estimating Unmet Palliative Care Need in the UK, held a workshop bringing together people affected by terminal illness and the professionals who support them.
Participants picked out and ranked the key elements that describe unmet need. The ones that were ranked highest focused on accessing services, the quality of services and how they are delivered to patients and families.
From this work, the researchers created the following definition:
How do we measure unmet need?
In 2023, a survey of bereaved family carers in England and Wales commissioned by Marie Curie gathered insights on the care received by the person who died. The unmet need definition above was used to analyse the survey results and someone was considered to have unmet palliative care needs if they had both:
- unaddressed symptoms and concerns – measured using the internationally used Integrated Palliative Care Outcome Scale.
and
- insufficient access to GP support – based on what bereaved family members reported.
Getting a national picture – now and for the future
Researchers applied the survey findings to national mortality data for England in the same year (536,311 deaths). The results reveal the scale of the issue:
- 46% – around 248,000 people – had unaddressed symptoms and concerns.
- 46% – around 245,000 people – lacked sufficient access to GP support.
- 32% – around 170,000 people – experienced both, meaning they had unmet need.
The survey covered both England and Wales, and a similar process was applied to the Welsh data with similar conclusions. Read the policy briefing for unmet palliative care need in Wales (bilingual version).
Estimating unmet need in Scotland and Northern Ireland
The team also applied the average of the survey findings for England and Wales to the relevant deaths data for Scotland and Northern Ireland. The result was around 200,000 people – or nearly 1 in 3 – dying with unmet palliative care needs. Another way to see it: someone dies with unmet need every three minutes.
How much will it grow in future?
They also estimated how much unmet need might grow in the future as the population gets larger and older, using official forecasts of future death rates.
In England, unmet need will rise quickly unless there’s more support. By 2050, an extra 40,000 people each year will miss out on the care they need compared with 2025 – reaching more than 210,000 people a year in total.
And looking at the UK as a whole, by 2050, more than 250,000 people in the UK won’t get all the end of life care they need if there’s no extra support. That number is 21% higher than in 2025 and means about 44,400 more people will miss out on care.
Revealing inequalities
We already know there are big differences in who can get good-quality care, and this research found similar patterns when looking at unmet need.
According to the research, about a third (34%) of people with multiple health conditions don’t get the care they need, compared with 25% of people without multiple conditions.
It also shows that 25% of people who are financially comfortable experience unmet need, but this rises to 36% for people who are just getting by or struggling financially.
Why these findings matter
Each number represents a person who could have had better comfort, dignity or support in their final days. A family left traumatised by being helpless to give their loved one the end of life they wanted.
No one should go without the care and support they need at such a vulnerable time – and it’s appalling that almost 1 in 3 people in the UK are suffering in this way.
Now’s our chance to fix end of life care
We’re asking leaders in England, Scotland, Wales and Northern Ireland to:
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Make end of life care a priority– make palliative and end of life care part of integrated healthcare in community settings and act now to improve the support dying people receive.
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Deliver 24/7 support for everyone who needs it – ensure every community has round-the-clock advice and coordination, with access to essential medicines when they’re needed most.
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Back the people who care – give those working to provide care at the end of life the training and recognition they deserve, so every person can receive compassionate, expert support wherever they are.
