CEO's blog: conversations about end-of-life

For the last 12 months I have acted as 'system champion' for Bedfordshire, Luton and Milton Keynes Integrated Care Board's Palliative and End of Life Transformation Programme.

 

As part of this work, through November and December, our team listened to local people talk openly about their experiences of palliative and end‑of‑life care. Many of those we met — people living with mental ill health, addiction, long‑term conditions and LGBTQ+ residents told us they’d never really been asked about this before. What they shared was honest, and it highlighted some things that clearly need to change.

 

People told us they often felt unprepared. Their understanding of end‑of‑life care usually came from lived experience rather than clear explanations. Families described feeling left in the dark as their loved one’s condition changed, unsure what was happening or what choices they had. 

 

Emotional support was a big gap. While clinical care was often kind, people didn’t always feel fully seen — especially those who’d faced stigma linked to addiction, mental ill health, or past trauma. Many wanted support that recognised their whole identity, not just their illness.

 

We also heard how little people knew about planning tools like Advance Care Plans or DNACPR forms (Do Not Attempt Resuscitation). These could have made difficult moments easier, but most residents simply hadn’t been guided through them.

 

Across all conversations, people raised concerns about fairness and inclusion. They hoped care would treat everyone equally, but many weren’t convinced that it always does — especially for communities whose needs are often misunderstood.

 

What people want is straightforward: clearer information, earlier conversations, services that understand the emotional as well as the practical realities of end‑of‑life care, and support that genuinely respects who they are.

 

The Central East ICB has pledged palliative and end-of-life care as a continued priority as it merges from three ICBs into a single body. Much progress has happened in neighbouring areas and MK to improve care and this progress will continue in earnest. Central East ICB has committed to taking this feedback into the design of its pathways and service design.

Although my role as Champion is coming to an end, we will continue working closely with them so the changes reflect what residents told us directly. Our role is to keep bringing your voices to the centre — honestly, consistently and without filters. Thank you to everyone who shared their experiences with us. 

 

Your insight is shaping how end‑of‑life care will be improved for others across Milton Keynes. If you have your own experience to share, we’re here to listen.