Committee publication · Engagement document · 5 September 2025
Palliative Care Lived experience roundtable breakout room 1 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 palliative and end-of-life care (PEoLC) lived experience contributors—patients, families, carers, healthcare professionals, and charity workers. Participants identified widespread disparities in care quality between specialist hospices (73% satisfaction) and generalist hospital services (43% satisfaction), postcode lottery access, poor service integration, lack of dedicated clinical support, insufficient training for generalist staff, and insufficient social care capacity to enable community-based care shifts.
Key findings
- Specialist hospice care delivers significantly better outcomes (73% satisfaction) than generalist hospital provision (43%), with geographic access highly variable based on location; majority of people dying never access hospice care.
- Generalist services lack understanding of palliative care definitions and appropriate clinical conversations; clinicians sometimes provide inaccurate information, deterring families from palliative approaches.
- Poor integration and communication between services causes duplication, delays, and distress; only 42% of surveyed individuals felt care was well-coordinated; information-sharing failures lead to harmful incidents.
- Families forced to advocate intensively for loved ones' care; system navigation particularly difficult for those without prior experience, non-English speakers, or ethnic minorities facing cultural mistrust of health services.
- Concerns about shifting care to community without adequate social care capacity, funding, training, and support for unpaid carers; building blocks including specialist family support and respite care largely absent.
- Lack of dedicated clinical persons to guide individuals through end-of-life journey; absence of Admiral nurses in many areas leaves families without specialist support; advance care planning conversations poorly timed and incompletely communicated.
Tone
FactualTopics
Key actors
Health and Social Care Committee, Independent Expert Panel (Palliative Care Inquiry), Lived experience roundtable participants (patients, families, carers, healthcare professionals, charity workers), Hospices, District nurses, GPs, Social care services, Admiral nurses
Notable line
“"the majority of people who die never even see the front door of a Hospice".”
Key Quotes
“73% of people said they were happy with Hospice care, but only 43% were happy with the hospital care they received at the end of life”
“… often I see patients and I ask where they live. I breathe a sigh of relief, or I'm disappointed.”
“"if we go palliative, we're going to stop everything. We won't need any more medications, we'll just stop everything …”
“Everything that we didn't want to happen and nobody could help us.”
“In my head everyone should be able to get good palliative and end of life care from generalist services, they shouldn't have to get it from specialist services.”
“"It wasn't that he didn't want the help, it's that he didn't trust where the help was coming from. People needed to build up time to have a relationship with him, but he was never given that time.”
“It wasn't until mum moved into the care home and when one of the nurses sat with me and explained the process of dying. They just made me feel like I could be a daughter again.”
“… only around 50% of the carers that we spoke to felt they were supported well enough while their relative was alive. And that fell to less than 50% when we were talking about support after a loved one or relative had died.”
Source · parliament.uk record ↗