If you are interested in becoming a Trustee of the PCPLD Network, please get in touch with us at firstname.lastname@example.org
The current trustees are:
Professor Irene Tuffrey-Wijne (Chair)
Irene Tuffrey-Wijne has been actively involved as a member of the PCPLD Network from the beginning. She has served as its chair from 2008 to 2014, and again from 2019. She also chairs the judging panel of the Linda McEnhill Award. Irene is originally from the Netherlands, where she qualified as a nurse in 1985. She is a member of the L’Arche London Community for people with learning disabilities (she lived and worked there for 8 years when she moved to England in 1985), and also spent 8 years working as a palliative care nurse at Trinity Hospice, Clapham. She is now a professor in palliative care and intellectual disabilities at Kingston University and St George’s University of London, where she has done research into the topic since 2001. Irene is passionate about improving the support people with learning disabilities receive at the end of life. She is particularly interested in finding ways to involve people with learning disabilities themselves and listen to their voices. She is in demand as an international speaker and has published books and articles on the palliative care needs of people with learning disabilities.
Dr Annie Stewart (Secretary)
Annie’s working life has all been in Devon – initially as a GP principal for 8 years and then for 18 years as an Associate Specialist in Palliative Medicine within a hospice inpatient unit. She retired 3 years ago but retains a firm belief in making excellent end of life care accessible for all. She first became involved with the PCPLD following on from its National Conference being held in Devon in 2010. She subsequently became a member of the Management Group (or Steering Group as it was called then) and early in 2017 became a trustee & secretary of the PCPLD Network.
Steve Mitchell (Treasurer)
Steve was co-opted as a Trustee early in 2017 as Treasurer after having been the independent financial examiner to PCPLD for several years. He has been involved in Finance for all of his working life, firstly with a multinational pharmaceutical company, first as the Area Finance Manager for the Middle East & North Africa Region and then as Commercial Manager for the Middle East & Africa. In 2004, he joined a Hertfordshire based mental health charity (Mind) as Director of Finance and stood down in 2012.
Carol Gray became a Trustee in 2019, having been part of the PCPLD network for a few years. Carol has lived in Devon for the past 11 years and prior to this lived in the Midlands. She is a Registered Nurse, a Queens’s nurse and works as a Specialist Advisor for the Care Quality Commission. Carol has worked in Palliative Care for most of her nursing career and has a passion for palliative care. She is always looking to make a difference for all in palliative care and especially vulnerable groups such as people with a learning disability and older people. Her current role is Nurse Consultant for Palliative and End of Life care.
Gemma Allen became a Trustee in 2019. She is the Diversity and Inclusion Lead at The Mary Stevens Hospice, Stourbridge where she has worked for six years. Gemma’s passion for good palliative and end of life care for all has resulted in numerous projects working with, and alongside, marginalised communities, enabling access and increasing awareness of palliative and end of life care. Gemma works closely with people with learning disabilities, listening to their stories and working alongside them to enable positive change within the hospice setting.
Gemma is the Chairperson of Dying Matters Dudley, a collaborative community group with the overall aim of lifting the lid on death and dying, encouraging and supporting the Dudley community to have open, honest, rich conversations around preparing and planning for end of life. She is a founder of The Midlands Palliative and End of Life Care for People with Learning Disabilities Network, launching May 2019 in partnership with Birmingham City University. Gemma is currently studying toward a Health and Wellbeing related MSc at Leeds Trinity University.
Dr Sarah Yardley, BM PGCertClinEd MA PhD MRCP MAcadMEd is a Consultant in Palliative Medicine, Central & North West London NHS Foundation Trust and Honorary Clinical Senior Lecturer, Marie Curie Palliative Care Research Department, University College London. Sarah’s research expertise is in qualitative methodologies, applied to health professions education, palliative care and patient safety through study of sociocultural influences, informal learning and ‘real world’ practices. Sarah’s research interests include: how patients, families, carers, and healthcare professionals do the work of frontline day-to-day healthcare and make sense of their experiences; specialist-generalist interfaces in palliative care; and, the impact human-dependent interventions such as therapeutic relationships have on current and future care. She is also on the Editorial Board for the journal Palliative Medicine and works clinically in a large palliative care service (hospital and community).
Specialist Advisory Group
The trustees are supported by the Specialist Advisory Group to help with the day-to-day responsibilities. This group includes people with learning disabilities, a family carer, and people working in the fields of learning disabilities or palliative care. The current members are:
Peter Allum (representing people with learning disabilities; based in London)
Pat Charlesworth (representing people with learning disabilities; based in London)
Kumar Cithambaram (Lecturer at the School of Nursing & Midwifery, Queen’s University Belfast)
Jo Elverson (Consultant in palliative medicine at St Oswald’s Hospice, Newcastle)
Louise Heatley (retired support worker in the L’Arche London community for people with learning disabilities; now part-time teacher for children with special needs in Dorset)
Louise Jenkins (Strategic Liaison Nurse for Secondary care & Tertiary care, Hertfordshire county council learning disability services)
Gillian McGee (Team leader, Key Housing for people with learning disabilities, Clydebank. Winner of the Linda McEnhill Award 2013)
Valerie Potter (Consultant in palliative medicine at St Bartholomew’s Hospital, London)
Sharon Prowse (senior manager at Freeways, a charity supporting people with learning disabilities in Bristol)
Jean Willson (representing family carers; based in London. Winner of the Linda McEnhill Award 2014)