Conversations that matter: talking about the end
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Healthwatch Milton Keynes were asked, by the BLMK Integrated Care Board End-of-Life Care Transformation team, to hold a series of conversations with local residents about their experiences of palliative and end of life care. They wanted to hear from people whose voices are not always included in these discussions. Using local insight, engagement work and available data, Healthwatch focused on speaking with people living with mental ill health and people with experience of addiction, to better understand what matters to them and make sure their views help shape future services. They spoke to 13 people.
Key findings
Understanding of palliative and End of Life care
This was mostly understood through lived experience.
Helpful vs. challenging care
Helpful care was described as compassionate staff help; whereas poor information and sudden decisions create stress.
Emotional, spiritual, cultural support
People felt this was largely inadequate; emotional care was valued as much as physical care.
Awareness of services
This was low outside major charities; People wanted clearer guidance.
Conversations about death
These were rare but useful; written wishes help when prompted.
Planning and decision-making
There was limited understanding; families struggle without prior guidance.
Equity, inclusion, respect
Services are not always accessible; diverse needs were often overlooked.