Senedd Cross Party Group on Hospice and Palliative Care

 

Sixth Senedd

 

Annual Report 2023-2024

 

 

1.    Group membership and office holders

 

Chair: Mark Isherwood MS

 

Senedd Members:

Mabon ap Gwynfor MS

Rhun ap Iorwerth MS

Jane Dodds MS

Janet Finch-Saunders MS

Mike Hedges MS

Altaf Hussain MS

Darren Millar MS

Peredur Owen Griffiths MS

 

Secretary: Matthew Brindley, Hospice UK

 

External Members:

Maxine Johnson, Cruse Bereavement Care Cymru

Andy Goldsmith, Ty Gobaith/Hope House

Huw Owen, Ty Hafan & Ty Gobaith/Hope House

Tracy Jones, Ty Hafan

Iwan Hughes, Royal Pharmaceutical Society

Laura Hugman, Paul Sartori Hospice at Home

Liz Booyse, City Hospice

Katie Reade, Hospice UK

Glenn Page, Macmillan

Rachel Jones, Marie Curie

Jon Antoniazzi, Marie Curie

Jane McGrath, St Kentigern Hospice

Trystan Pritchard, St David's Hospice

Gethin Rhys, Cytûn - Churches Together in Wales

Emma Saysell, St David's Hospice Care

Grant Usmar, Hospice of the Valleys

Lesley Bethell, Compassionate Cymru

John Moss, Compassionate Cymru

Sian Guest, MNDA

Rachel Williams, Parkinson’s UK Cymru

Melanie Minty, Care Forum Wales

Heather Ferguson, Age Cymru

Ceridwen Hughes, Same but Different

Mary Mitchell, TIDE

 

 

2.    Highlights of the year

 

·         CPG continues to be an active and inclusive forum that brought together 80 people with lived experience, clinical and community expertise, and policy and research knowledge.

·         The CPG has kept hospice and palliative and end of life care issues on the agenda writing regularly to and engaging Welsh Government, Health Boards, and various government bodies advocating for policy and funding solutions to support and develop a more sustainable sector and address inequalities in access to care.    

·         Joint in-person CPG with Funerals and Bereavement enabled wider sharing of experiences and good practice from across sectors.

 

 

3.    Meetings since CPG established

 

Thursday 13th July 2023 (In-person and virtually)

 

Issues covered:

 

·         Annual General Meeting

·         The future of hospice care in Wales and challenges facing adult and children’s services

·         Spotlight on Advance Care Planning

 

Attendance:

 

Mark Isherwood MS

Will Davies (Rhys ab Owen MS)

Fay Morley, Paul Sartori Hospice at Home

Emma Saysell, St David’s Hospice Care

Dominic Carter, Hospice UK

Catrin Glyn, Carers Trust Wales

Matthew Brindley, Hospice UK

Tina Ahang, Together for Short Lives

Tracy Jones, Tŷ Hafan

Laura Hugman, Paul Sartori Hospice at Home

Miranda McGinn, City Hospice

Prof. Mark Taubert

Ellen Greer, St Kentigern Hospice

Mary Mitchell

John Moss, Compassionate Cymru

Gethin Rhys, Cytûn Churches Together in Wales

Grant Usmar, Hospice of the Valleys

Huw Owen, Ty Gobaith/Ty Hafan

Jenny-Anne Bishop OBE, Unique Transgender Network

Liz Booyse, City Hospice

Emily Hearne (David Rees MS)

Rachel Jones, Marie Curie

 

 

Thursday 18 October 2023 (In-person and virtually): Joint CPG with Funerals and Bereavement

 

Issues covered:

 

·         The challenges facing Welsh hospices and the Welsh Government Phase 3 Palliative and End of Life Care Funding Review

·         Introduction to the What Matters Most visual storytelling project

·         Implications of the Fuller Inquiry into the care of deceased people

·         Supporting and educating young people about bereavement

 

Attendance:

 

Mark Isherwood MS (chair)

Glenn Page, Macmillan Cancer Support

Deborah Smith, Wordsmith Communication (Secretary – CPG F&B)

Gethin Rhys, Cytûn: Churches Together in Wales

Matthew Brindley, Hospice UK (Secretary – CPG H&PC)

Huw Owen, Ty Hafan/Ty Gobaith Children’s Hospice

Kim Bird

Jon Antoniazzi, Marie Curie

Terry Tennens, SAIF

Phillip Blatchly, Phillip Blatchly & Sons

Kathy Riddick, Humanists UK

John Adams, Perry & Phillips

Andrew Judd, NAFD

Anna-Louise Marsh, Covid-19 Bereaved Families for Justice Cymru

Rachel Bradburne, NAFD

John Moss, National Bereavement Framework Programme Manager

Philip Blatchly, PR Blatchly

Liz Booyse, Chair of Hospices Cymru

Carol Humphreys, Care for the Family

Ceridwen Hughes, Sam but Different

Maxine Johnson, Cruse Bereavement Support Wales

Mary Mitchell, Lived Experience

Stephen Tom, Philip Tom & Sons,

Katie Reade, Hospice UK

Rhys Price, Gwilym Price

Dr Sally Stringer, Same but Different

Trystan Pritchard, St David's Hospice

Laura Hugman, Paul Sartori Hospice at Home

Emma Saysell, St David’s Hospice Care

Grant Usmar, Hospice of the Valleys

Catrin Glyn, Carers Trust Wales

Tash Wynne, Marie Curie

Rachel Bradburne, NAFD

Glenn Page, Macmillan Cancer Support

Tomos Evans, Marie Curie

Gethin Rhys, Cytûn: Churches Together in Wales

Huw Owen, Ty Hafan/Ty Gobaith Children’s Hospice

Jon Antoniazzi, Marie Curie

 

 

 

Thursday 29th February 2024 (In-person and virtually)

 

Issues covered:

 

·         Spotlight on digital health and inclusion in palliative and end of life care

·         Progress developing national Advance and Future Care resources

·         Update on hospice funding and National Programme for Palliative and End of Life Care

 

Attendance:

 

Mark Isherwood MS (Chair)

Matthew Brindley, Hospice UK (Secretary)

Catrin Glyn, Carers Trust Wales

Glenn Page, Macmillan Cancer Support

Anna Tee, Macmillan Cancer Support

Ben Dellow, Together for Short Lives

Grant Usmar, Hospice of the Valleys

Catherine Hodge, Hospice UK

Hilary Watson, MS Society

Prof. Mark Taubert

Huw Owen, Ty Gobaith/Ty Hafan

Liz Booyse, City Hospice

John Moss, Compassionate Cymru

Gethin Rhys, Cytûn Churches Together in Wales

Laura Hugman, Paul Sartori Hospice at Home

Lauren Emberton, Nightingale House Hospice

Natasha Wynne, Marie Curie

Rachel Jones, Marie Curie

Melanie Minty, Care Forum Wales

Lynda Kenway, NHS Executive

 

 

 

4.    Professional lobbyists, voluntary organisations and charities with whom the Group has met during the preceding year

 

Speaker/presentations from:

 

·         Rachel Bradburne, Director of Policy, and Public Affairs, the National Association of Funeral Directors

·         Anna-Louise Marsh-Rees, Group Lead for Covid-19 Bereaved Families for Justice Cymru

·         John Adams, Perry & Phillips Funeral Directors

·         Emma Kneebone, 2Wish

·         Laura Hugman and Fay Morley, Paul Sartori Hospice at Home

·         Prof. Mark Taubert, NHS Palliative Care Consultant and Chair of Advance & Future Care Planning Strategy Group NHS Wales

·         John Moss, National Bereavement Framework Programme Manager

·         Dr Idris Baker, National Clinical Lead for Palliative and End of Life Care

·         Tracy Jones, Director of Family Wellbeing and Outreach Services, Ty Hafan Children’s Hospice

·         Andy Goldsmith, CEO, Ty Gobaith and Hope House Children’s Hospice

·         Ceridwen Hughes and Dr Sally Stringer, Same but Different

·         Catherine Hodge, Research Manager at Hospice UK

·         Trystan Pritchard, CEO, St David’s Hospice

·         Liz Booyse, CEO, City Hospice and Chair, Hospices Cymru

·         Rachel Jones, Associate Director Wales, Marie Curie

 

 

Annual Financial Statement 2023-2024

 

Group’s Expenses.

No expenses incurred.

£0.00

Costs of all goods.

No goods purchased.

£0.00

Benefits received by the group or individual Members from outside bodies.

No benefits received.

£0.00

Any secretariat or other support.

 

Policy and public affairs support paid for by Hospice UK

£4501.00

 

Services provided to the Group such as hospitality.

 

Date

Description and name of provider

 

Cost

No Hospitality provided

 

£0.00

No Hospitality provided

 

£0.00

Total cost

 

£4501.00