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 in Learning Disabilities.

Phoebe is a Clinical Nurse Specialist for people with learning disabilities working at St Christopher’s Hospice in South East London. Phoebe works across both the community and inpatient setting support people with a learning disability who have a life limiting condition.

Phoebe is passionate about reducing inequalities and improving access to palliative care and end of life care services for people with a learning disability, recognising the need for reasonable adjustments to provide good quality care.

She enjoys teaching and raising awareness about palliative care for people with learning disabilities.

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.

Mick Howe (ACMA) is a Chartered Management Accountant with a track record of making finance make sense to non-financial people.  He has no background in Palliative Care, nor with People with Learning Disabilities, but he has over 40 years experience of voluntary work as Treasurer of various Clubs and Events.  He was Group Financial Controller for a multi-national industrial hi-tech company and is now a freelance finance and systems consultant.  He brings clear financial communication, budgetting and forecasting skills, and reporting know-how to the PCPLD Network.  In his free time he rows competitively and coaches Sussex Uni students. 

Irene Tuffrey-Wijne was actively involved as a member of the PCPLD Network from the beginning. She served as its chair from 2008 to 2014, and again from 2019 to 2020. 

In September 2024 Irene made the decision to step down as a trustee of the PCPLD Network. Irene remains part of the charity as our acedemic partner at Kingston University. 

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 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 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 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.

Meet Jane Nickels: Jane has over 17 years of nursing experience, Jane is not just a nurse; she is a supporter for those living with neurological conditions, particularly learning disabilities and dementia.

As the UK’s first Learning Disabilities Admiral Nurse, she forged a path in 2020, championing the needs of adults with learning disabilities and autistic individuals. Obtaining a master’s degree in 2021 in ‘Autism Studies’, she is equipped to support those facing many cognitive challenges throughout their life span. In her current role at Retford and Villages Primary Care Network, Jane is dedicated to guiding families through the complex journey of dementia, from the point of diagnosis to end of life support, ensuring tailored support for all. Her mission? To share knowledge, empower, and elevate the understanding of dementia care within the community whilst advocating for good quality palliative and end of life care.

Jane believes in the power of collaboration—working hand-in-hand with families, care providers, and communities to create nurturing environments for everyone impacted by health care inequalities. Proud to be part of the PCPLD Network, sharing it’s passion and drive for change!