Recently, I had the opportunity to speak at the Westminster Health Forum about something that will touch every family at some point: how we ensure people receive the right care, support and dignity at the end of life.
When we talk about palliative and end of life care, we're talking about much more than medical treatment. It's about helping people live as well as possible for whatever time they have left, while supporting those closest to them. That means looking beyond clinical needs to understand what matters most to each person, whether that's managing physical symptoms, feeling safe, maintaining dignity, staying connected to loved ones, or having practical and emotional support in place.
At Marie Curie, we believe everyone who needs palliative or end of life care should be able to access high-quality support. Their diagnosis, postcode, financial circumstances or personal background should not determine the care they receive.
Yet we know that this isn't the reality for many people today.
Our research shows that alongside being free from pain and other distressing symptoms, people approaching the end of life place huge importance on dignity, self-respect, feeling safe and being surrounded by people they love. Unfortunately, around one in three people currently experiences unmet palliative care need, whether that's unmanaged symptoms, insufficient support, poor coordination between services, or difficulty accessing care when they need it. In England, that's approximately 170,000 people every year.
The people most likely to miss out on good palliative care are often the same people who experience inequalities and inequity throughout their lives. This includes some ethnic minority communities, LGBTQ+ people, people living in poverty, people in deprived or remote areas, and inclusion health groups such as people experiencing homelessness or people in prison.
If we're serious about tackling health inequalities, we must also be serious about tackling inequalities at the end of life.
This challenge is becoming more urgent. Our population is ageing, more people are living with multiple long-term conditions, and demand for palliative and end of life care continues to grow. Estimates suggest unmet need could increase by 23% over the next 25 years, meaning around 40,000 more people could experience unmet need in 2050 compared with today.
So what needs to change?
Firstly, we need to identify people earlier and offer palliative care sooner. Too often, support arrives only in the final days or weeks of life. Earlier conversations, personalised planning and proactive support can make a significant difference.
Secondly, care needs to be available wherever it best meets a person's needs, whether that's at home, in a hospice, care home, community setting or hospital. Strong community services are particularly important if we want people to have genuine choice.
Thirdly, access to good palliative care should not depend on diagnosis, geography or care setting. Everyone should benefit from strong generalist palliative care alongside timely access to specialist support when their needs are more complex.
And finally, people, families and professionals need access to advice, coordination and support around the clock. Serious illness doesn't keep office hours, and neither should support for those approaching the end of life.
There are real opportunities on the horizon. The Modern Service Framework has the potential to drive meaningful improvements, particularly through its focus on reducing inequalities in outcomes. But ambition alone won't be enough. It must be backed by adequate investment, clear accountability and a commitment to directing resources according to need.
The emerging Neighbourhood Health Framework is another promising development, with its focus on organising care around people and communities rather than services and institutions. However, if we want to shift care from hospitals into communities, we need upfront investment to make that happen.
Alongside this, introducing minimum quality standards, improving data collection and strengthening workforce planning will be essential. In particular, we need sustained investment in GP services, district nursing, community nursing and specialist palliative care if we are to meet future demand.
Ultimately, improving end of life care is about more than healthcare services alone. Death and dying are shaped by people's communities, cultures, relationships and life experiences. Creating better experiences at the end of life means recognising that reality and designing services that are flexible, inclusive and responsive to diverse needs.
For commissioners, policymakers and healthcare leaders, the challenge is clear. We need a system that puts people, not pathways, at its centre. One where dignity, compassion and equity are not ambitions to strive for but standards people can expect.
Because where someone lives, who they are or what condition they have should never determine the quality of care they receive at the end of life.
