Meet the
TEAM
Principal-Investigators
Professor Irene Tuffrey-Wijne
Professor of Intellectual Disability and Palliative Care, Kingston University
DAPPLE Project role: Irene leads the entire project. She is also the lead for the case studies and study sites overall. Irene Tuffrey-Wijne is a Professor of Intellectual Disability & Palliative Care at Kingston University. In the 1980s she lived and worked in L’Arche London (a community with people with learning disabilities). In the 1990s she worked as a nurse at Trinity Hospice, London. Since 2001, Irene has led a programme of research and development focusing on learning disability, bereavement and palliative care. She has published widely and presented her work in the UK and across the world, and is recognised as the leading international expert in the area of palliative care for people with intellectual (learning) disabilities. Inclusion of people with learning disabilities as study participants and as salaried researchers is a key part of her work.
Dr Becky Anderson
Research Associate,
Kingston University
DAPPLE Project role: Becky co-leads the DAPPLE project with Irene and supervises the 'Identification of Need' part of the study. Becky Anderson is a Research Associate at Kingston University. She is a qualitative health researcher and her previous research projects have been about decision-making for people with learning disabilities and their families, healthcare communication, and end-of-life care. She co-led the Victoria & Stuart Project, a study on end of life care planning for people with learning disabilities
Co-Investigators
Amanda Cresswell
Research Assistant,
Kingston University
DAPPLE Project role: Support and advice for PPIE activities (Patient and Public Involvement and Engagement) Amanda Cresswell, who has a learning disability, has been a researcher (working alongside Irene) since 2008, working on research around learning disability, cancer, death and dying. She has taught palliative care staff and medical students about communication and has been involved in inspecting respite homes for people with learning disabilities. Amanda has spoken at conferences across Europe. In 2016 she co-founded the GRASSroots group of people with learning disabilities who met regularly to discuss death and bereavement.
Richard Keagan-Bull
Research Assistant,
Kingston University
DAPPLE Project role: Joint PPIE lead for the DAPPLE project (Patient and Public Involvement & Engagement). Co-lead the co-production group of people with a learning disability, as well as other PPI activities, engagement and outputs, together with Jo Giles. Richard Keagan-Bull, who has a learning disability, has been a Research Assistant at Kingston University since 2021. His research experience included doing interviews with people with learning disabilities, and analysing the data that is collected with the team. He has also experience of co-facilitating co-design groups. Richard was on The Shaw Trust Disability Power 100 list. He is a Trustee at Walsingham Support and is on the Editing Team of ‘Community Living’ Magazine. He was the Co-Chair of The Assembly for people with learning disabilities in Lambeth for 10 years. Richard has written his life story which was published in October 2022. He started his own podcast series in 2024, Cuppa Tea with Richard.
Jo Giles
Research Assistant,
Kingston University
DAPPLE Project role: Joint PPIE lead with Richard. Jo will Co-lead the project's PPI activities, engagement and outputs. Jo Giles has been a Research Assistant and support worker at Kingston University since 2021. She will support Richard in his role and other researchers with a learning disability, prepare inclusive materials and ensure engagement. Jo has worked with people with a learning disability for many years in a range of different roles. In 2016 she co-founded the GRASSroots group of people with learning disabilities who met regularly to discuss death and bereavement. She is also an End-of-Life Doula.
Professor Louise Wallace
Professor of Psychology & Health,
The Open University
DAPPLE Project role: Louise will lead the senior manager interviews in the 4 study sites. Louise is Professor of Psychology & Health at The Open University, and a clinical and health psychologist. She has worked as clinician and hospital chief executive and has had many non-executive roles. She undertakes research on how to improve health by behaviour change and improve the delivery of health and social care services.
Professor Liz Tilley
Professor of Learning Disability Studies,
The Open University
DAPPLE Project role: Liz is contributing to the scoping review, case studies and PPI & project outputs. She is a co-lead for the Bedfordshire, Luton and Milton Keynes site. Liz Tilley is Professor of Learning Disability Studies in the School of Health, Wellbeing and Social Care, Faculty of Wellbeing, Education and Language Studies, at The Open University (OU). She has been researching in the field of learning disabilities, health and social care, and inclusion for two decades. Liz is one of the Co-Investigators on the DAPPLE Project, leading the OU team.
Professor Erica Borgstrom
Professor of Medical Anthropology,
The Open University
DAPPLE Project role: Erica co-leads the Bedfordshire, Luton and Milton Keynes site (WP3). She also supports the project with its use of ethnographic methods and online education. Erica Borgstrom is Professor of Medical Anthropology in the School of Health, Wellbeing and Social Care, Faculty of Wellbeing, Education and Language Studies, at The Open University (OU). She has been researching end of life care for 15 years.
Dr Joanne Jordan
Research Fellow,
The Open University
DAPPLE Project role: Lead the scoping review Joanne Jordan is a Research Fellow in the School of Health, Wellbeing and Social Care, Faculty of Wellbeing, Education and Language Studies, at the Open University (OU). In the DAPPLE Project, Joanne role is to find out how palliative and end-of-life care is already being provided to people with learning disabilities. In the past Joanne worked on another project that looked at how people with learning disabilities who convey behaviours which other people may find difficult are helped when they move from one place of care to another.
Dr Freya Tyrer
Research Fellow in Epidemiology,
University of Leicester
DAPPLE Project role: Leading National Data Base Analysis. Freya is an Epidemiologist at the Leicester Real World Evidence Unit, University of Leicester. She has a keen interest in observational research using electronic health records and has carried out numerous research projects in relation to health inequalities and adults living with learning disabilities.
Professor Francesco Zaccardi
Deputy Director,
Leicester Real World Evidence Unit, University of Leicester
DAPPLE Project role: Provides clinical, statistical and CPRD expertise for the national data base analysis, and help ensure that CPRD data are made available. Francesco Zaccardi is a Clinical Epidemiologist and Deputy Director of the Leicester Real World Evidence Unit, Diabetes Research Centre, University of Leicester. After completing his residency in Internal Medicine and Diabetes at the Catholic University School of Medicine in Rome, he has been visiting researcher at the Cardiovascular Epidemiology Unit, University of Cambridge, and at the Institute of Public Health and Clinical Nutrition, University of Eastern Finland. His main interests are epidemiology of cardiometabolic diseases, comparative assessment of glucose-lowering drugs and medical statistics.
Dr Chris Williams
Senior GP Clinical Lecturer and Head of Quality, University of Leicester; Associate Director of Research at LOROS Centre for Excellence
DAPPLE Project role: Co-lead and supervision of the Leicester study site. Chris also provides a clinical perspective. Chris Williams is a Senior Lecturer at University of Leicester and sits in the Research Team at the LOROS Hospice Centre for Excellence in palliative and end of life care.
Dr Zoebia Islam
Deputy Lead for Research,
LOROS Hospice Associate; Professor of Palliative Care and Frailty,
University of Leicester
DAPPLE Project role: Lead Leicester study site; provide EDI perspective (Equality, Diversity & Inclusion) Over the last 20 years, Dr Zoebia Islam she has contributed to education and research particularly in the area of ethnicity and health inequalities and inequity having managed a number of innovative and high profile projects at the University of Warwick’s Medical School, BSMHFT, UK and now at LOROS. Zoebia also Chairs and convenes the national ‘Sawubona – Equity in Palliative Care for All Research Forum’.
Dr Gyles Glover
Independent consultant
DAPPLE Project role: Advise and support for the national data base analysis Dr Gyles Glover is a retired psychiatric public health specialist currently based in Cambridge, UK. He worked at Charing Cross Westminster medical school, the Institute of Psychiatry, the research unit of the Royal College of Psychiatrists and the English Department of Health. He was appointed professor of public mental health at the University of Durham, before moving to the new national public health observatory network and subsequently Public Health England. His research covered the use of national healthcare activity statistics to address questions of psychiatric epidemiology and the clinical audit of mental health services. At the Department of Health he redesigned the collection of the statistics documenting most types of NHS specialist mental healthcare. In Durham he was responsible for annual documentation of the mental health services available throughout England between 2000 and 2005. Between 2010 and 2019 he co-directed the English observatory monitoring the physical and mental health and healthcare of people with intellectual disabilities and autistic spectrum conditions. In retirement he has worked on the development of statistical monitoring of the health of autistic people in England.
Project Staff
Christina Roberts
Project Manager,
Kingston University
DAPPLE Project role: Project Manager Christina Roberts holds a master's degree in Psychology at the University of York where she specialised in developmental disorders. She also completed a master's in Social Science Research at Loughborough University. After graduating, Christina was a teaching assistant for young people with autism and learning disabilities. In 2022-2024, she worked at the University of Central Lancashire as a Research Assistant for 'Learning from lives and deaths - people with a learning disability and autistic people' (LeDeR), co-authoring annual LeDeR reports and a Race and Health Observatory report about barriers to healthcare for people with a learning disability from ethnic minority backgrounds. Here, she developed a passion for coproduction - research that is 'with and for' not 'on and about' people. Before joining the DAPPLE team, Christina worked as a Senior Research Assistant coordinating coproduced research projects about mental health in young parents and relational practice.
Dr Andrea Bruun
Research Fellow,
Kingston University
DAPPLE Project role: Researcher for the Croydon/South London study site. Day-to-day management of Identification of need (Experience-Based Co-Design to develop methods enabling identification of PEOLC need). Dr Andrea Bruun has co-managed the Victoria & Stuart Project (a study end of life care planning with people with learning disabilities), and she also led the EDI (Equality, Diversity & Inclusion) strand of the project together with VODG. Andrea recently finished her PhD on prognostic decision-making within hospice multidisciplinary teams at the Marie Curie Palliative Care Research Department at University College London. Throughout her studies at UCL, she has been involved with several projects within the palliative care field. Andrea has a background in Linguistics from Aarhus University, Denmark. She is particularly interested in social interaction and is specialised in the methods of Conversation Analysis.
Jonathon Ding
Research Associate,
Kingston University
DAPPLE Project role: Researcher for the Kirklees study site. Jonathon (Jonny) Ding has worked at Kings College London as a research assistant on the LeDeR programme, a national programme to help healthcare services improve care and reduce health inequalities experienced by people with a learning disability. Jonny conducted quantitative and qualitative analysis and worked with co-production groups to make the annual reports accessible to people with a learning disability.
Dr Ned Redmore
Research Fellow,
The Open University
DAPPLE Project role: Researcher for the Bedfordshire, Luton and Milton Keynes study site. Ned Redmore is a researcher in the School of Health, Wellbeing and Social Care, Faculty of Wellbeing, Education and Language Studies, at The Open University (OU). Ned specialises in conducting ethnographic research in health and social care services for people with learning disabilities.
Dr Lorna Rouse
Researcher,
The Open University
DAPPLE Project role: Supporting the scoping review Lorna Rouse is a Research Associate in the School of Health, Wellbeing and Social Care, Faculty of Wellbeing, Education and Language Studies, at The Open University (OU). She has previously worked on projects in healthcare and in the field of learning disabilities including exploring the quality of diabetes care for people with learning disabilities
Joanne Miksza
Researcher,
University of Leicester
DAPPLE Project role: Working on the national data base analysis Joanne Miksza is an epidemiologist working for the Real World Evidence Unit at Leicester University’s Diabetes Centre. She specialises in working with large electronically collected datasets that are representative of real world populations using GP and hospital data. Her research interests include examining how inequalities effect health outcomes for different patient groups.
Sunny Sokhal
Research Assistant,
Kingston University
DAPPLE Project role: Support PPIE and co-production Sandeep (Sunny) Sokhal, who has a learning disability, has taken up a new role as researcher at Kingston University. He has been a learning disability & autism co-facilitator, teaching healthcare staff, including as part of the Oliver McGowan training. He is also a member of the Staying Alive and Well Group, tasked with creating accessible versions of the national LeDeR reports about deaths of people with a learning disability.
Francesca Horne
Research Associate,
LOROS Hospice
DAPPLE PROJECT ROLE: Researcher for the Leicester study site. Francesca Horne works on a number of projects at the LOROS Centre of Excellence. She recently completed her PhD studies at Nottingham Trent University, which explored the implementation and adoption of technology enabled care in older adult care. For several years, she worked as a Research Assistant, within the Mary Seacole Research Centre at De Montfort University on various projects including MeHeLp (Mental Health Literacy in India), Inclusion in NHS Derbyshire and Sickle Cell Disease and Shielding Experiences. Francesca did a BSc in Psychology and Cognitive Neuroscience, and a Masters in Cognitive Neuroscience.
Fred Inglis
Research Associate,
Kingston University
DAPPLE PROJECT ROLE: Co-production manager Fred Inglis has undertaken research with people who have learning disabilities using accessible qualitative methods and inclusive public engagement activities. Fred enjoys working in projects that meaningfully involve people with learning disabilities, and believes the perspectives, experiences and skills they bring to research are invaluable.