Finding the gaps & closing the gaps

Dying, death, bereavement - and people with learning disabilities

16th September 2021

Please note: this event will be held online

Please note : A recording of the event will be made available to paid delegates only for a limited period of time.

16th September 2021

10:00-15:00

Conference Chair: Professor Irene Tuffrey-Wijne

Co-Chair Peter Allum

Time Session

10:00-10:10 Welcome and introduction

Gemma Allen, Chair PCPLD Network

Professor Irene Tuffrey-Wijne, Trustee PCPLD Network

Peter Allum, Specialist Advisory Group Member PCPLD Network

10:10- 10:15 GRASSroots

10:15-10:45 Plenary 1 Professor Mark Taubert, NHS Palliative Medicine Consultant and Professor Cardiff University School of Medicine. “Igam Ogam” Pandemic advance care plan experiences in Wales

10:45-11:15 Plenary 2 David Harling, Head of Learning Disability Nursing, NHS England. 'Assuring the valuable contribution of learning disability nurses in palliative care'

11.15- 11.30 Refreshment break

11:30-12:00 Conference papers

Dr Thomas Fretwell- The Adult neurodisabillity MDT: Improving Advance Care Planning in those with Complex Conditions

Professor Stuart Todd- Last Days of Life in 12 months of COVID19: Patterns of death and dying in care settings for adults with learning disabilities in the UK

Gemma Allen, Dr Jed Jerwood and Dudley Voices for Choice- No Barriers Here: Advance care planning and people with intellectual disabilities

12:00-12:45 Lunch

12:45-13:00 Digital poster presentation

Sarah Helton How do children with severe learning disabilities or profound and multiple learning disabilities communicate grief? A literature review.

Tina Morris and Sarah Jaramillo-Fernadez Finding the Gaps and Closing the Gaps- Good

Sue Marsden- Mind the gap- widening access to Hospice care for people with a Learning Disability: initial outcomes

13:00-13:30 Afternoon plenary

Dr Jo Elverson, Consultant in adult palliative medicine, St Oswalds Hospice. Hello- Goodbye! Getting the best out of transition to adult health services

13:30-14:10 Conference papers

Louise George- The West of England Learning Disabilities Collaborative

James Norris- Digitalising and improving postural assessment in Wales- Health Hack and the Postural Care Passport’

Nicola Thurgood- Dying to Talk

Sue Marsden- How do carers prepare and support people with learning disabilities when facing bereavement

14:10-14:30 Dr Kathryn Mannix, Retired Palliative Care Physician and author of ‘With the End in Mind’ and ‘Listen’ - Tender Conversations

14:30-15:00 Questions from the audience and panel Q&A

Conference programme updated 19 July 2021.