Senedd Cross Party Group on Hospice and Palliative Care

Minutes

5 November 2025

Attendance:

Mark Isherwood MS (Chair)	Peter Fox MS
Margaret Hollings, St David's Hospice	Andrea Powell, Cruse Bereavement Care
Matthew Brindley, Hospice UK (Secretary)	Liz Booyse, City Hospice
Grant Usmar, Hospice of the Valleys	Andy Goldsmith, Ty Gobaith/Hope House
Dr Victoria Wheatley, Palliative Care Consultant, Hywel Dda UHB	Carol Davies, HDA
Ceridwen Hughes, Same but Different	Dr. Gwenllian (Gwen) Davies, Palliative Care Consultant, Swansea Bay UHB
Harriet Redington, Hospice UK	Dr Idris Baker, National Programme Board for PEOPLC
Laura Hugman, Paul Sartori Hospice at Home	Lauren Emberton, Nightingale House Hospice
Tracy Jones, Ty Hafan	Dr Sarah Davies, Consultant Physician, BCUHB
Natasha Davies, Marie Curie	Tomos Evans, Marie Curie
Oscar Din, Pancreatic Cancer UK

Apologies:

Emma Saysell, St David's Hospice Care	Sam Rowlands MS
Darren Rutland, HAD

Welcome, introduction and apologies

Mark Isherwood welcomed members and speakers to the CPG meeting exploring:

- The Dying to be Heard Exhibition capturing end-of-life care experiences and promoting honest and open conversations

- An update on the work of the National Programme for Palliative & End of Life Care

- The implications for Wales of the Terminally Ill Adults (End of Life) Bill

Minutes of previous meeting & matters arising

Minutes from the previous CPG on Hospice and Palliative Care meeting were confirmed by Andrea Powell and seconded by Sarah Davies.

The Dying to be Heard Exhibition

Mark Isherwood welcomed Ceridwen Hughes from Same but Different and their creative work focusing on capturing end-of-life care experiences and promoting honest and open conversations. Mark noted that it was nearly two years since he sponsored the Senedd launch of the What Matters Most exhibition, and it was great to see that this work had continued and developed.

Below Ceri's slides:

Ceri described the huge impact the death of a loved one has on family and friends and how their experiences need to be properly captured and understood.

The What Matter Most pilot project was the first step towards doing this and helped create the current Dying To Be Heard project funded by the National Lottery Community Fund. The project is working with Betsi Cadwaladr University Health Board and Bangor University. It uses images to provoke a response to questions about how palliative and end of life care are delivered, keeping the patient at the centre.

Some of the key themes the project has focused on include rurality, planning, a good death, social issues, and community. Going forward, it wants to capture more experiences from diverse voices and communities, with a focus on inequalities in access to palliative and end of life care.

Questions/discussion

Mark thanked Ceri for her presentation and said the CPG would help share the project.

Dr Sarah Davies and Dr. Gwen Davies asked if there was a Welsh component to the project and suggested the CPG include Cymraeg poem and video by Tudor Hallam.

Ceri said there was Welsh language content as part of the project and they are always interested in reaching out to hear people's experiences.

Liz Booyse, Tracy Jones and others thanks Ceri for sharing what they thought was very brave and visually beautiful work.

Update on the work of National Programme for Palliative & End of Life Care

Dr Idris Baker provided a summary of key documents recently published by the National Progamme Board for Palliative and End of Life Care:

National Service Specification for Wales: Palliative and End of Life Care Services which establishes clear standards for the provision of high-quality, equitable, and person-centred care that patients, their families, and unpaid carers can reasonably expect to receive.
All Wales Competency Framework for Adult Palliative and End of Life Care which outlines the core competencies expected of healthcare professionals involved in the provision of palliative and end of life care (PEoLC) for adults. It serves as a guide for individuals, teams, managers, educators, and organisations to understand and meet the standards required for safe, effective, and person-centred care.
New National Guidance to Support Bereaved Children and Young People in Wales which provides a clear framework for Local Health Boards and multi-agency partners to design regional pathways of support that are compassionate, inclusive, and developmentally appropriate.

Idris said a stakeholder group was being formed to inform the delivery of the National Guidance to Support Bereaved Children and Young People. He also described ongoing work to implement the new Service Specification focused on understanding where Health Board's and others are in terms of meeting standards. He also highlighted the capacity constraints facing the National Proramme Board in taking forward this work and hoped they would have more capacity moving forward.

Questions/discussion

Mark Isherwood thanked Idris for his presentation.

Tracy Jones asked how are Health Board's accountable for delivering against the Service Specification for paediatrics, to which Idris said the National Programme Board is working on this.

Natasha Davies asked if there is an Assessment Measurement Framework for the Service Specification, to which Idris said they would be developing one in the coming months.

Mark Isherwood asked what expectations the Service Specification puts on hospices considering the significant challenges they face and the wider context of assisted dying. Idris said hospice commissioning is central to this work and the delivery of the Service Specification is part of addressing the pressures facing hospices. The priority is to get palliative and end of life care right and drive down inequity of care.

Liz Booyse said that hospices are essential to the delivery of palliative and end of life care in Wales and achieving the aims of the Service Specification.

The implications for Wales of the Terminally Ill Adults (End of Life) Bill

Mark Isherwood welcomed Dr Victoria Wheatley and acknowledged the broad range of knowledge and expertise in the room and encouraged everybody to contribute to the discussion.

Below Victoria's slides:

Key points Victoria highlighted in her presentation:

· Many people will not be eligible for assisted dying and new societal expectations may increase suffering around the expectation/duty to die

· The Bill doesn’t promote choice and is being introduced at a point in time when access to Specialist Palliative Care (SPC) is patchy with a quarter of Wales not having access to a SPC bed

· Bill flies in the face of suicide prevention and poses the risk of increasing non-medical suicides

· Patent story describing a person wanting to die when they didn't have access to proper palliative care but changing their perspective and wanting to live within 48 hours of receiving palliative care

· Just 1% of doctors are likely to participate in an assisted dying service at the same time as numbers eligible could be significant

· Danger that assisted dying options conversations with patients will have to happen even if the Bill says doctors aren't obliged to

Questions/discussion

Mark Isherwood thanked Victoria for her presentation and asked where the figure of just 1% of doctors being likely to participate in assisted dying came from and if there was a similar figure for Wales? Victoria said the figure was based on data in other countries where assisted dying was introduced and that there wasn't a Wales specific figure available.

Dr Gwenllian Davies highlighted concerns about Welsh language provisions in the Bill and asked if there would be enough support/staff to have these conversations in Welsh. Felt a specific Welsh voice from Hospice UK is needed, thinks there are separate issues not being represented, and an opt out/in clause is needed.

Dr Idris Baker said that from the perspective of the National Programme Board for Palliative and End of Life Care, they would be concerned if the introduction of assisted dying tracked ahead of urgent and necessary work to improve access to palliative and end of life care in Wales. This could increase any form of jeopardy that already existing for people unable to access care. Also said there wasn’t effective noise on opt out/in from Hospice UK and broad frustration with ‘neutral view’.

Laura Hugman asked what should frontline providers do? Ceridwen Hughes said Marie Curie and Hospice UK should be doing more and Margaret Hollings suggested Hospices Cymru should collate a report on survey data and further thoughts from across Wales.

Dr Victoria Wheatly said that those campaigning for assisted dying were far better resourced than doctors and more organisations needed to speak up if they felt strongly about the issue.

Matthew Brindley said that Hospice UK is working with it's hospice members to address concerns/issues with the Bill and actively involved in representing hospice and palliative care interests in Westminster and Wales, but will look at what more can be done in Wales specifically. He also highlighted that the private members route for this bill left more questions than answers, due to the majority of the detail as to how it would be delivered being delegated to the Secretary of State. He said Hospice UK's CEO, Toby Porter was joining the Hospices Cymru meeting the following day and would provide an update and discuss issues raised in more detail with hospice members and others.

Liz Booyse said Hospices Cymru would look at what it could do with hospice members to address assisted dying concerns/issues.

Mark Isherwood welcomed Peter Fox MS, Chair of Senedd Health and Social Care Committee to talk about his work on the Legislative Consent Memorandum for the Terminally Ill Adults (End of Life) Bill.

Peter Fox summarised the key conclusions and recommendations from the Senedd Health and Social Care Committee report on the Legislative Consent Memorandum for the Terminally Ill Adults (End of Life) Bill.

Dr Victoria Wheatly and Dr Gwenllian Davies expressed frustration that the committee hadn’t received a lot of evidence from them because NHS collated evidence only had submissions from a few health boards, so decided it wasn’t representative and didn’t send to the committee.

Peter Fox and Mark Isherwood encouraged members to share evidence with them ahead of the LCM debate.

Natasha Davies asked why the LCM had such limited scope and if there was the opportunity to broaden it? Dr Sarah Davies asked how the LCM could be debated properly when the Lords are still making amendments?

Peter Fox said that it would be difficult to change Welsh Government's position on the scope of the LCM at this stage and that he wasn't sure of their timing on a Senedd vote considering what's happening in the Lords and that this may change.

Mark Isherwood suggested the CPG write to Cabinet Secretary raising the key assisted dying issues highlighted in the presentations and discussion. He also suggested the CPG could issue a press release.

Any other business

Next meeting and close

Mark Isherwood thanked everybody for joining the CPG meeting and said a date for the next meeting would be circulated.