Committee publication · Engagement document · 5 September 2025
Palliative Care Breakout room 2 summary note 2603
From: Health and Social Care Committee
Inquiry: Palliative Care
Summary
This engagement document summarises a breakout room discussion from the Health and Social Care Committee's Independent Expert Panel evaluation of palliative care in England. Clinicians and service providers met on 26 March 2025 to discuss commissioning, service delivery, community shift, and workforce across four focus areas. Participants identified significant gaps: insufficient and inequitable commissioning of services, weak coordination between acute and community care, insufficient workforce capacity (particularly for children's services and district nursing), and barriers to implementing a community-based model including IT interoperability, medication access, and inadequate training across the generalist and unpaid care workforce.
Key findings
- Current palliative care commissioning is insufficient and inequitable across England; commissioning at ICB level has weakened relationships with providers compared to previous models, with particular gaps in children's and young people's services.
- GPs are withdrawing from hands-on end-of-life care due to capacity constraints and other competing demands; specialist palliative care teams are being pushed to fill gaps, creating an unsustainable model requiring ever-increasing specialist numbers.
- District nursing workforce has declined by 50% with poor retention and training; community nursing services lack palliative care skills, particularly for children, and 24/7 coverage is sparse or absent in many areas.
- Advance care planning completion rates are around 5% in whole populations; the focus on documentation and DNAR discussions is misplaced; participants advocate shifting emphasis from advance care planning to 'what matters most' conversations.
- Multiple systemic barriers impede community shift: lack of IT interoperability between services, complex medication prescribing and access processes, absence of shared governance structures between trusts, out-of-pocket costs for families, and low death literacy across paid carers (only ~13% have end-of-life care training).
Tone
CriticalTopics
Key actors
Health and Social Care Committee, Independent Expert Panel, NHS England, Department of Health and Social Care, Integrated Care Boards (ICBs), CQC (Care Quality Commission), Queen's Nursing Institute, Compassionate Cities Charter
Notable line
“Advance care planning is important, but it is not for everyone. Participant I: There is too much emphasis on DNAR decisions and discussions …”
Key Quotes
“I do not think commissioning has been as strong since it has been at the ICB level. I think the model where people providing palliative care for people locally came together with oversight from a body more removed was more effective.”
“The simple answer is no – it is very sporadic and inequitable. It is different between areas and certainly different between ICBs.”
“"We have to be aware of the assumption that equality, in other words, delivery of one service is going to meet everyone's needs".”
“One of the key things that we miss out on a regular basis is asking questions about what matters most to you, what makes life good, what's most important to you.”
“There are multiple randomised controlled trials that do not show that advance care planning works.”
“[There are] fewer district nurses, the district nurses [available] are less experienced, [there are] fewer palliative care nurses, and GPs are burnt out.”
“"Often in areas that I cover there is no district nurse after 10PM. So actually when I am talking about choice it is an illusion really, if you would like to die at home because if there is nobody to give that palliative care [subcutaneous] injection for pain, it is just not possible".”
“"There is perhaps a tendency to think that we focus on palliative care services to deliver end of life care, but actually it is much broader than this…We need to shift from thinking that this is a service delivery problem …”
Source · parliament.uk record ↗