Committee publication · Engagement document · 5 September 2025
Palliative Care Lived experience roundtable breakout room 2 summary note 2304
From: Health and Social Care Committee
Inquiry: Palliative Care
Summary
Summary note from a Health and Social Care Committee roundtable held 23 April 2025 with lived experience contributors (patients, families, carers, healthcare professionals, charity workers) on palliative and end-of-life care. Key issues raised: poor hospital discharge communication, fragmented service integration, insufficient overnight community care, over-reliance on hospices, variable quality of hospital-based holistic care, and heavy advocacy burdens on informal carers.
Key findings
- Hospital discharge often provides insufficient information and medication details; patients and carers receive only leaflets and medication without comprehensive discharge planning, despite complex care needs at home.
- Palliative and end-of-life care is fragmented across multiple organisations with poor inter-service communication, placing administrative burden on patients and carers to navigate and coordinate their own care.
- Overnight community care is severely limited and difficult to access; participants reported "waiting game of luck" to secure night care, with variable quality when available.
- Hospice sector provides high-quality care but access is geographically inconsistent; patients in some areas cannot engage with hospice services and may choose hospital death despite preferences for community or hospice care.
- Hospital inpatient palliative care focuses narrowly on acute symptoms (pain) rather than holistic needs; informal carers must advocate extensively (often over months with minimal sleep) to secure appropriate support and services.
Tone
CriticalTopics
Key actors
Health and Social Care Committee, Independent Expert Panel on Palliative Care Inquiry, Hospice sector, NHS hospital discharge teams, Charity organisations providing overnight care, Healthcare professionals, Informal carers
Notable line
“"they just gave us leaflets and a bag of medication and sent us home with my father".”
Key Quotes
“… they just gave us leaflets and a bag of medication and sent us home with my father”
“… changed a lot, and they've never addressed that, despite the numerous admissions”
“What would happen to somebody who was much older, much more frail, who couldn't advocate for themselves, [that was discharged] without any real thought or discussion about care for ongoing needs in a similar situation?”
“When trying to get night care for my father we had to play a waiting game of luck…to see if [we] would get a call back for night care for that particular night”
“I think it's remarkable to think that when people get to the end of life, and they're discharged from hospital, the only place who are actually there for somebody is a hospice”
“I pushed hard to get her the medication that she needed, the physiotherapy, the speech and language therapy…it was just hard for three months”
“I was only allocated a social worker for my father after contacting every person I could think of speaking to in the area”
“… this can often be down to how much you or somebody else advocates for you, sometimes how lucky you get”
Source · parliament.uk record ↗