Inequality and end of life care in England: Why are people still missing out?

At the start of Dying Matters Awareness Week, a new national review once again highlights the barriers to good quality end of life care for different groups of people.

Patient with nurse at our Newcastle Hospice

Last year, Marie Curie commissioned researchers at the London School of Economics to explore the evidence about the the fairness of access to palliative care.

The findings made worrying reading: more than 100,000 people in the UK miss out on the care they need each year. What’s more, certain groups are more likely to miss out or have a poor experience than others. Since then, we’ve been working to raise the profile of palliative care and make the system fairer.

Access to good care still isn’t fair

A new review by the independent health and social care regulator in England, the Care Quality Commission (CQC) underlines why this work is still important and necessary.

To find out what the barriers to good end of life care are, and how inequalities can be overcome, it presents new evidence, analysis and case studies from groups in our society who may face discrimination or be vulnerable because of their circumstances.

For each group, there are particular issues which can impact on their care. For example, people from BAME communities, Gypsies and travellers, and LGBT people report feeling that staff made assumptions about their relationships or care preferences. And that meant it was more difficult to make real choices about their care.

For people with a learning disability or mental health condition, assumptions or a lack of awareness about their physical health can mean a terminal diagnosis is missed.

These groups also have to contend with more general issues relating to end of life care, such as poor care coordination and a lack of strategic focus from commissioners and providers in some areas.

Putting equality at the heart of care

At Marie Curie, we believe everyone has the right to receive good quality palliative care, whenever and wherever they need it.

That means recognising that sometimes ‘treating everybody the same’ isn’t enough. Instead, care providers need to consider whether someone’s background, characteristics or circumstances might require a different approach. Tailoring care ensures people feel at ease and are able to make choices about their care.

The CQC has encouraged commissioners and providers to fulfil their duties to eliminate discrimination and bring about equality in end of life care provision.

They have also appealed to local leaders to work together to deliver individual, person-centred end of life care for everyone who needs it.

We will continue caring and campaigning across the UK to help make this a reality.

We will be blogging throughout Dying Matters Awareness Week (9-15 May) to provide expert perspectives on having “the big conversation” about end of life care. You can also sign up to hear more about our campaigns.