TRUSTEES
If you are interested in becoming a Trustee of the PCPLD Network, please get in touch with us at info@pcpld.org
The current trustees are:
Sue Marsden (Chair)
Hi !
My name is Sue Marsden and I am the Chair of the PCPLD.
I was really proud to be voted in as chair in Feb 2023, and look forward to supporting the charity progressing with the new website, and working with our Trustees and Special Advisory Group to continue promoting best practice in End of Life Care for people with Learning Disabilities.
I am a Learning Disability nurse with 28 years experience, 25 yrs of which was in Learning Disabilities, gradually developing an interest in EoLC. Recently I have moved into working full time in Palliative Care at Greenwich and Bexley Hospice, but maintain my special interest.
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.
Mr Mick Howe (treasurer)
Irene Tuffrey-Wijne
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 to 2020. 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 of 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.
Sarah Yardley
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).
Dr Jo Elverson
Dr Jo Elverson is a Consultant in Palliative Medicine working in the North East of England. Jo works with both adults and children in hospice, hospital and community settings. She is particularly interested in improving care for young adults with complex conditions as they transition from children’s to adult services, recognising the role that palliative care can play in supporting holistic care, planning ahead and making sure that young people and their families are able to have their voices heard.
Jo became a member of the Specialist advisory group in 2019 and has enjoyed learning from the other members of the group and contributing to discussions. She was delighted to be given the opportunity to join the trustees this year.
Valerie Potter
Valerie Potter BSc MSc MBChB FRCP graduated in medicine in 2007 and completed her speciality training in London. She is a palliative medicine consultant at St Bartholomew’s and Newham University Hospitals and co clinical director of the palliative care network across Barts Health NHS Trust. She is heavily involved in quality improvement and also in the training of doctors specialising in palliative medicine as well as in providing palliative and end of life education to those working in other fields. Valerie is experienced clinically in providing care to a range of people with both malignant and non-malignant disease and is passionate about increasing awareness of, and widening access to, high quality care. She has a specialist interest in palliative care for people with learning disabilities and became a member of PCPLD’s specialist advisory group in 2019 and subsequently, a trustee in 2022. Valerie has authored several publications within her speciality, spoken at events and has contributed to a national curriculum for a medical module to link in with the new Advanced Clinical Practitioners in Learning Disability.
Louise Jenkins
Louise Jenkins is a Strategic Liaison Nurse in Hertfordshire’s Community Learning Disability Nursing service which is a part of Hertfordshire County Council’s Adult Disability Service. After qualifying in 1996 Louise has worked in many LD Nursing roles across residential care, supported living and community teams and has worked with many people with complex and deteriorating physical health conditions and a learning disability. About 10 years ago she realised that many people with LD were not being referred to Palliative care services and linked up with her local Hertfordshire services in a project that won a nomination of the Linda McEnhill award by the Palliative Care for People with LD network (PCPLD) and Louise became a member of the PCPLD Specialist Advisory Group in 2012. Since then she has worked collaboratively with palliative care colleagues in shaping and connecting the services to enable greater understanding of LD and end of life issues and increased referrals between services, and worked jointly to deliver training to social care providers in end of life training
Sarah Swindells
Sarah currently oversees Health and Wellbeing for the people supported by Dimensions (around 3500 people with learning disabilities and/or autism). Sarah has spent many years campaigning equity for people with learning disabilities and/or autism. She is currently also member of the BILD (British Institute Learning Disabilities) national GOLD steering group (Growing Older with Learning Disabilities), member of the Learning Disabilities Professional Senate and Chair of the Health Collaboration Group. Prior to her role in Dimensions, Sarah managed a Department of Health funded project on Dementia and Learning Disabilities; which went on to win several national awards and this led to Sarah securing additional funding with Sarah managing a new project titled ‘Dying to Talk’: a project focused on breaking down barriers regarding talking about End of Life with people with Learning Disabilities and their circles of support. Currently Sarah is also part of the Victoria and Stuart Project (funded by NIHR) led by Kingston University.
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)
Louise Jenkins (Strategic Liaison Nurse for Secondary care & Tertiary care, Hertfordshire county council learning disability services)
Catherine Wood (Family Carer, previous direct support worker and manager of Learning Disability Services. Based in West Yorkshire)
Phoebe Mooney -Learning Disability and Young Adult Clinical Nurse Specialist based in London.
James Benfield -representing people with Learning Disability James Elsworthy-representing people with Learning Disability
Dr Claud Regnard– retired Consultant in Palliative Medicine. Developed DisDat assessment tool. Has set up Current Learning in Palliative Care (www.clip.org.uk) website.
Jean Willson (representing family carers; based in London. Winner of the Linda McEnhill Award 2014)
Web and social media manager
Anastasiya Stravolemova
Anastasiya Stravolemova has a strong mass communications and journalism background and is an experienced radio editor, presenter and producer, having hosted several morning and night live programmes focusing on current affairs and culture. In the past few years she has been actively working as a creative, cultural and educational events producer for educational and government organisations. MA Journalism and Mass Communications and MSc Economics graduate.
Anastasiya Stravolemova is working behind the scenes to manage our website, social media and communications. If you have relevant information you would like to share (for example, about events or new developments), or you have ideas for webinars, podcasts or other outreach activities, contact her on info@pcpld.org.