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Clearing Study Experience Research Collaborate About us

Professor Irene Tuffrey-Wijne

Faculty of Health, Science, Social Care and Education
Department of Public Health and Children's, Learning Disabilities and Mental Health Nursing
Centre for Health and Social Care Research
Kingston Hill

Professor of Intellectual Disability and Palliative Care

[email protected]

About

I hold the world’s first Chair of Intellectual Disability & Palliative Care. I lead Kingston University’s award-winning learning disability research group. I have led a programme of research development at St George’s University of London (2001-2012) Kingston University London (from 2013). I completed my PhD in 2007 at Maastricht University (Netherlands).

My research has focused on the experiences of people with a learning disability (internationally known as ‘intellectual disability’) around death and bereavement; communication and breaking bad news; and the provision of palliative care, including end-of-life care planning. Inclusion of people with a learning disability as study participants and as salaried researchers is a key part of our research, and developing inclusive research methods is one of our strengths. I have published widely and presented my work in the UK and across the world.

My background is in nursing. I qualified as a nurse in Amsterdam (The Netherlands) in 1985. I lived and worked in the L’Arche London Community for people with a learning disability between 1985 and 1993. I worked as a ward nurse and community nurse specialist at Trinity Hospice (Clapham) from 1993 to 2001.

I currently lead several projects, including the DAPPLE Project (NIHR159160), a national study on palliative and end of life care provision for people with an intellectual disability. She also leads the co-production element (involvement of people with an intellectual disability and autism) in the NHS England Learning Disability Mortality (death) Review (LeDeR) Programme.

See my website for more information about my work.

Qualifications

PhD (2007) Maastricht University, Netherlands
BSc Nursing Studies (First Class Honours) (1999) King's College London, UK
Diploma of Higher Education Nursing Studies (Palliative Care) with Distinction (1996), King's College London, UK
1985 HBO-V (Registered Nurse) Gijsbreght Academie (College of Nursing), Amsterdam, Netherlands

Domains

Publications

In a room or on Zoom?: Trying out an online research course for people with intellectual disabilities

Bruun, Andrea, Head, Dominic, Stewart, Ian, Stevenson, Isobel, Smith, Jordan, Kaur, Kiran, Winder, Lewis, Hakim, Mo, Southernwood, Renait, Priest, Andrew, Wainwright, Gerard, Jordan, Leon, Keagan-Bull, Richard, Giles, Jo and Tuffrey-Wijne, Irene, 2026, Journal of Intellectual Disabilities, E-pub ahead of print

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Using non‐standard research methods to explore the perspectives of people with intellectual disabilities on sensitive topics: a discussion of the research paradigm, data collection methods and data analysis

Tuffrey‐Wijne, Irene, Bruun, Andrea and Anderson‐Kittow, Rebecca, 2026, Journal of Applied Research in Intellectual Disabilities (39), 3, Published

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Getting it out there: reflections on the process and impact of public engagement activities in a study on end‐of‐life care planning with people with intellectual disabilities

Bruun, Andrea, Cresswell, Amanda, Jeffrey, David, Jordan, Leon, Keagan‐Bull, Richard, Giles, Jo, Swindells, Sarah, Wilding, Meg, Payne, Nicola, Allen, Gemma, Hughes, Rhidian, Tilley, Elizabeth, Gibson, Sarah L., Anderson‐Kittow, Rebecca and Tuffrey‐Wijne, Irene, 2026, Health Expectations (29), 2, Published

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Palliative and end-of-life care in people with and without intellectual disabilities in primary care: identification, survival time, and healthcare utilization

Tyrer, Freya, Miksza, Joanne, Zaccardi, Francesco, Gillies, Clare L., Khunti, Kamlesh, Borgstrom, Erica, Tilley, Elizabeth and Tuffrey-Wijne, Irene, 2026, Family Practice (43), 2, Published

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Exploring England’s palliative and end-of-life care systems for people with learning disabilities: the perspectives of senior health and social care professionals and commissioners

Redmore, Ned, Wallace, Louise and Tuffrey-Wijne, Irene, 2025, British Journal of Learning Disabilities, E-pub ahead of print

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Don't assume, ask! A focus group study on end-of-life care planning with people with intellectual disabilities from minoritised ethnic groups

Bruun, Andrea, Jordan, Leon, Giles, Jo, Hughes, Rhidian, Anderson-Kittow, Rebecca and Tuffrey-Wijne, Irene, 2025, BMC Palliative Care (24), Published

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Evaluating a toolkit for end-of-life care planning with people with intellectual disabilities: an exploration of implementation outcomes within intellectual disability social care services

Bruun, Andrea, Cresswell, Amanda, Jeffrey, David, Jordan, Leon, Keagan-Bull, Richard, Giles, Jo, Gardiner, Faye, Wilding, Meg, Payne, Nicola, Swindells, Sarah, Gibson, Sarah L., Anderson-Kittow, Rebecca and Tuffrey-Wijne, Irene, 2025, Journal of Intellectual Disabilities, E-pub ahead of print

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Developing service models for adult palliative and end of life care for people with a learning disability (The DAPPLE Project): protocol for a mixed-method study

Tuffrey-Wijne, Irene, Tilley, Elizabeth, Tyler, Freya, Islam, Zoebia, Borgstrom, Erica, Jordan, Joanne, Glover, Gyles, Wallace, Louise, Roberts, Christina, Giles, Jo, Keagan-Bull, Richard, Cresswell, Amanda and Anderson-Kittow, Rebecca, 2025, BMJ Open (15), 7, Published

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Palliative care communication between patients with intellectual disabilities and hospice staff: a conversation analysis pilot study protocol

Bruun, Andrea and Tuffrey-Wijne, Irene, 2025, BMJ Open (15), 6, Published

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Co-designing a toolkit of approaches and resources for end-of-life care planning with people with intellectual disabilities within adult social care settings: a multi-phase study

Tuffrey-Wijne, Irene, Bruun, Andrea, Tilley, Elizabeth, Giles, Jo, Gibson, Sarah, Cresswell, Amanda, Keagan-Bull, Richard, Jordan, Leon, Allen, Gemma, Swindells, Sarah, Payne, Nicola, Hughes, Rhidian and Anderson-Kittow, Rebecca, 2025, Journal of Applied Research in Intellectual Disabilities (JARID) (38), 1, Published

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Reflections on an evidence review process to inform the co-design of a toolkit for supporting end-of-life care planning with people with intellectual disabilities

Tilley, Elizabeth, Rouse, Lorna, Tuffrey-Wijne, Irene and Anderson-Kittow, Rebecca, 2024, Health Expectations (27), 5, Published

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The all together group: co-designing a toolkit of approaches and resources for end-of-life care planning with people with intellectual disabilities in social care settings

Bruun, Andrea, Cresswell, Amanda, Jeffrey, David, Jordan, Leon, Keagan-Bull, Richard, Giles, Jo, Swindells, Sarah, Wilding, Meg, Payne, Nicola, Gibson, Sarah L., Anderson-Kittow, Rebecca and Tuffrey-Wijne, Irene, 2024, Health Expectations (27), 4, Published

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What are we planning, exactly? The perspectives of people with intellectual disabilities, their carers and professionals on end-of-life care planning: A focus group study

Bruun, Andrea, Cresswell, Amanda, Jordan, Leon, Keagan-Bull, Richard, Giles, Jo, Gibson, Sarah L., Anderson-Kittow, Rebecca and Tuffrey-Wijne, Irene, 2024, Palliative Medicine (38), 6 pp 669-678, Published

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Co-designing resources to support older people with intellectual disabilities and their families plan for parental death and transitions in care

Anderson-Kittow, Rebecca, Keagan-Bull, Richard, Giles, Jo and Tuffrey-Wijne, Irene, 2024, Health Expectations (27), 2, Published

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It is up to healthcare professionals to talk to us in a way that we can understand: informed consent processes in people with an intellectual disability

Ding, Jonathon, Keagan-Bull, Richard and Tuffrey-Wijne, Irene, 2024, BMJ Quality & Safety, E-pub ahead of print

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Being a child with intellectual disabilities in hospital: the need for an individualised approach to care

Oulton, Kate, Gibson, Faith, Kenten, Charlotte, Russell, Jessica, Carr, Lucinda, Hassiotis, Angela, Kelly, Paula, Kerry, Sam, Tuffrey-Wijne, Irene, Whiting, Mark and Wray, Jo, 2023, Journal of Applied Research in Intellectual Disabilities, E-pub ahead of print

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Behavioural sleep problems in children and adults with intellectual disabilities: an integrative literature review

Harper, Lynette, McAnelly, Su, Walshe, Ian, Ooms, Ann and Tuffrey-Wijne, Irene M., 2023, Journal of Applied Research in Intellectual Disabilities, E-pub ahead of print

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Euthanasia and physician-assisted suicide in people with intellectual disabilities and/or autism spectrum disorders: investigation of 39 Dutch case reports (2012-2021)

Tuffrey-Wijne, Irene, Curfs, Leopold, Hollins, Sheila and Finlay, Ilora, 2023, BJPsych Open (9), 3, Published

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Degree of autonomy in making independent choices by frail older people with intellectual disabilities in a care home: a descriptive ethnographic study

Noorlandt, Hanna W., Korfage, Ida J., van der Sar, Lisa J., Felet, Freek M.A.J., Tuffrey-Wijne, Irene, van der Heide, Agnes and Echteld, Michael A., 2023, Journal of Applied Research in Intellectual Disabilities, E-pub ahead of print

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Top ten tips palliative care clinicians should know about navigating the needs of adults with intellectual disabilities

Moore, Caitlyn M., Pan, Cynthia X., Roseman, Karin, Stephens, Mary M., Bien-Aime, Casey, Morgan, Ann C., Ross, Wendy, Castillo, Matthew C., Palathra, Brigit C., Jones, Christopher A., Ailey, Sarah, Tuffrey-Wijne, Irene, Smeltzer, Suzanne C. and Tobias, Jane, 2022, Journal of Palliative Medicine (25), 12 pp 1857-1864, Published

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"My name on the door by the professor's name": the process of recruiting a researcher with a learning disability at a UK university

Anderson, Rebecca J., Keagan-Bull, Richard, Giles, Jo and Tuffrey-Wijne, Irene, 2022, British Journal of Learning Disabilities, E-pub ahead of print

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Equal access to hospital care for children with learning disabilities and their families: a mixed-methods study

Oulton, Kate, Wray, Jo, Kenten, Charlotte, Russell, Jessica, Carr, Lucinda, Hassiotis, Angela, Jewitt, Carey, Kelly, Paula, Kerry, Sam, Tuffrey-Wijne, Irene, Whiting, Mark and Gibson, Faith, 2022, Health and Social Care Delivery Research (10), 13, Published

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Maximising engagement and participation of intellectual disability (ID) staff in research: insights from conducting a UK-wide survey

Lam, Claire Kar Kei, Bernal, Jane, Finlayson, Janet, Todd, Stuart, Taggart, Laurence, Boaz, Annette and Tuffrey-Wijne, Irene, 2021, Journal of Intellectual Disabilities (25), 4 pp 554-566, Published

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The impact of nutrition on sleep in people with an intellectual disability: an integrative literature review

Harper, Lynette, Ooms, Ann and Tuffrey Wijne, Irene, 2021, Journal of Applied Research in Intellectual Disabilities (34), 6 pp 1393-1407, Published

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Consensus on a conversation aid for shared decision making with people with intellectual disabilities in the palliative phase

Noorlandt, Hanna W., Korfage, Ida J., Tuffrey-Wijne, Irene, Festen, Dederieke, Vrijmoeth, Cis, van der Heide, Agnes and Echteld, Michael, 2021, Journal of Applied Research in Intellectual Disabilities, E-pub ahead of print

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Developing a training course to teach research skills to people with learning disabilities: "It gives us a voice. We CAN be researchers!"

Tuffrey-Wijne, Irene, Lam, Claire Kar Kei, Marsden, Daniel, Conway, Bernie, Harris, Claire, Jeffrey, David, Jordan, Leon, Keagan-Bull, Richard, McDermott, Michelle, Newton, Dan and Stapelberg, Diane, 2020, British Journal of Learning Disabilities (48), 4 pp 301-314, Published

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Shared decision-making with people with intellectual disabilities in the last phase of life: a scoping review

Noorlandt, H. W., Echteld, M. A., Tuffrey-Wijne, I., Festen, D. A.M., Vrijmoeth, C., van der Heide, A. and Korfage, I. J., 2020, Journal of Intellectual Disability Research (64), 11 pp 881-894, Published

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Communicating about death and dying with adults with intellectual disabilities who are terminally ill or bereaved: a UK-wide survey of intellectual disability support staff

Tuffrey-Wijne, Irene, Finlayson, Janet, Bernal, Jane, Taggart, Laurence, Lam, Claire Kar Kei and Todd, Stuart, 2020, Journal of Applied Research in Intellectual Disabilities (33), 5 pp 927-938, Published

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The palliative care needs of adults with intellectual disabilities and their access to palliative care services: a systematic review

Adam, Emily, Sleeman, Katherine E., Brearley, Sarah, Hunt, Katherine and Tuffrey-Wijne, Irene, 2020, Palliative Medicine (34), 8 pp 1006-1018, Published

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To flag or not to flag: identification of children and young people with learning disabilities in English hospitals

Kenten, Charlotte, Wray, Jo, Gibson, Faith, Russell, Jessica, Tuffrey-Wijne, Irene and Oulton, Kate, 2019, Journal of Applied Research in Intellectual Disabilities (32), 5 pp 1176-1183, Published

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"Because of his intellectual disability, he couldn't cope." Is euthanasia the answer?

Tuffrey-Wijne, Irene, Curfs, Leopold, Finlay, Ilora and Hollins, Sheila, 2019, Journal of Policy and Practice in Intellectual Disabilities (16), 2 pp 113-116, Published

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Learning disability nurse provision in children's hospitals: hospital staff perceptions of whether it makes a difference

Oulton, Kate, Wray, Jo, Hassiotis, Angela, Kenten, Charlotte, Russell, Jessica, Tuffrey-Wijne, Irene, Whiting, Mark and Gibson, Faith, 2019, BMC Pediatrics (19), 192, E-pub ahead of print

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Excellence in palliative and end-of-life care provision for people with intellectual disability

Tuffrey-Wijne, Irene and Davidson, Jason, 2018, International Journal of Palliative Nursing (24), 12 pp 598-610, Published

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Mapping staff perspectives towards the delivery of hospital care for children and young people with and without learning disabilities in England: a mixed methods national study

Oulton, Kate, Gibson, Faith, Carr, Lucinda, Hassiotis, Angela, Jewitt, Carey, Kenten, Charlotte, Russell, Jessica, Whiting, Mark, Tuffrey-Wijne, Irene and Wray, Jo, 2018, BMC Health Services Research (18), 203, Published

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Euthanasia and assisted suicide for people with an intellectual disability and/or autism spectrum disorder: an examination of nine relevant euthanasia cases in the Netherlands (2012-2016)

Tuffrey-Wijne, Irene, Curfs, Leopold, Finlay, Ilora and Hollins, Sheila, 2018, BMC Medical Ethics (19), 17, Published

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Communicating about death and dying: developing training for staff working in services for people with intellectual disabilities

Tuffrey-Wijne, Irene, Rose, Tracey, Grant, Robert and Wijne, Astrid, 2017, Journal of Applied Research in Intellectual Disabilities (30), 6 pp 1099-1110, Published

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Investigating the factors that affect the communication of death-related bad news to people with intellectual disabilities by staff in residential and supported living services: an interview study

Tuffrey-Wijne, I. and Rose, T., 2017, Journal of Intellectual Disability Research (61), 8 pp 727-736, Published

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Do-Not-Attempt-Resuscitation orders for people with intellectual disabilities: dilemmas and uncertainties for ID physicians and trainees. The importance of the deliberation process

Wagemans, A. M.A., van Schrojenstein Lantman-de Valk, H. M.J., Proot, I. M., Bressers, A. M., Metsemakers, J., Tuffrey-Wijne, I., Groot, M. and Curfs, L. M.G., 2017, Journal of Intellectual Disability Research (61), 3 pp 245-254, Published

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The benefits of gaining research experience through a secondment

Rose, Tracey and Tuffrey-Wijne, Irene, 2017, Learning Disability Practice (20), 1 pp 36-39, Published

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Pay More Attention: a national mixed methods study to identify the barriers and facilitators to ensuring equal access to high-quality hospital care and services for children and young people with and without learning disabilities and their families

Oulton, Kate, Wray, Jo, Carr, Lucinda, Hassiotis, Angela, Jewitt, Carey, Kerry, Sam, Tuffrey-Wijne, Irene and Gibson, Faith, 2016, BMJ Open (6), Published

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Role confusion as a barrier to effective carer involvement for people with intellectual disabilities in acute hospitals: findings from a mixed-method study

Tuffrey-Wijne, Irene, Abraham, Elisabeth, Goulding, Lucy, Giatras, Nikoletta, Edwards, Christine, Gillard, Steve and Hollins, Sheila, 2016, Journal of Advanced Nursing (72), 11 pp 2907-2922, Published

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Developing research, policy and practice in palliative care for people with intellectual disabilities will benefit everyone

Tuffrey-Wijne, Irene, Curfs, Leopold and Deliens, Luc, 2016, Palliative Medicine (30), 7 pp 613-615, Published

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Defining consensus norms for palliative care of people with intellectual disabilities in Europe, using Delphi methods: A White Paper from the European Association of Palliative Care (EAPC)

Tuffrey-Wijne, Irene, McLaughlin, Dorry, Curfs, Leopold, Dusart, Anne, Hoenger, Catherine, McEnhill, Linda, Read, Sue, Ryan, Karen, Satgé, Daniel, Straßer, Benjamin, Westergård, Britt Evy and Oliver, David, 2016, Palliative Medicine (30), 5 pp 446-455, Published

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Developing research priorities for palliative care of people with intellectual disabilities in Europe: a consultation process using nominal group technique

Tuffrey-Wijne, I., Wicki, M., Heslop, P., McCarron, M., Todd, S., Oliver, D., De Veer, A., Ahlström, G., Schäper, S., Hynes, G., O'Farrell, J., Adler, J., Riese, F. and Curfs, L., 2016, BMC Palliative Care (15), 36, Published

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Book review of: 'Peaceful, pain free and dignified: palliative and end of life care for people on the autism spectrum' by Jill Ferguson and Val Lauri

Tuffrey-Wijne, Irene, 2016, eHospice: Palliative Care News, Views and Inspiration from around the World, Published

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Palliative care for people with intellectual disabilities: the EAPC White Paper in a nutshell

Tuffrey-Wijne, Irene, 2016, European Journal of Palliative Care (23), 1 pp 45-47, Published

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End-of-life decision-making for people with intellectual disability from the perspective of nurses

Wagemans, A. M.A., van Schrojenstein Lantman-de Valk, H. M.J., Proot, I. M., Metsemakers, J., Tuffrey-Wijne, I. and Curfs, L. M.G., 2015, Journal of Policy and Practice in Intellectual Disabilities (12), 4 pp 294-302, Published

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Breaking bad news to people with learning disabilities and dementia

Tuffrey-Wijne, Irene and Watchman, Karen, 2015, Learning Disability Practice (18), 7 pp 16-23, Published

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The challenges in monitoring and preventing patient safety incidents for people with intellectual disabilities in NHS acute hospitals: evidence from a mixed-methods study

Tuffrey-Wijne, Irene, Goulding, Lucy, Gordon, Vanessa, Abraham, Elisabeth, Giatras, Nikoletta, Edwards, Christine, Gillard, Steve and Hollins, Sheila, 2014, BMC Health Services Research (14), 432, Published

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The barriers to and enablers of providing reasonably adjusted health services to people with intellectual disabilities in acute hospitals: evidence from a mixed-methods study.

Tuffrey-Wijne, Irene, Goulding, Lucy, Giatras, Nikoletta, Abraham, Elisabeth, Gillard, Steve, White, Sarah, Edwards, Christine and Hollins, Sheila, 2014, BMJ Open (4), 4, Published

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Authors' reply.

Hollins, Sheila and Tuffrey-Wijne, Irene, 2014, British Journal of Psychiatry (205), 5, Published

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Improving hospital care for patients with intellectual disabilities.

Tuffrey-Wijne, Irene and Hollins, Sheila, 2014, British Journal of Hospital Medicine (75), 6 pp 304-305, Published

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Preventing 'deaths by indifference': identification of reasonable adjustments is key.

Tuffrey-Wijne, Irene and Hollins, Sheila, 2014, British Journal of Psychiatry (205), 2 pp 86-87, Published

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Identifying the factors affecting the implementation of strategies to promote a safer environment for patients with learning disabilities in NHS hospitals: a mixed-methods study

Tuffrey-Wijne, I., Giatras, N., Goulding, L., Abraham, E., Fenwick, L., Edwards, C. and Hollins, S., 2013, Health Services and Delivery Research (1), 13, Published

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Meeting the needs of patients with learning disabilities

Hollins, Sheila and Tuffrey-Wijne, Irene, 2013, BMJ (346), f3421, Published

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Developing guidelines for disclosure or non-disclosure of bad news around life-limiting illness and death to people with intellectual disabilities

Tuffrey-Wijne, Irene, Giatras, Nikoletta, Butler, Gary, Cresswell, Amanda, Manners, Paula and Bernal, Jane, 2013, Journal of Applied Research in Intellectual Disabilities (26), 3 pp 231-242, Published

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The factors affecting end-of-life decision-making by physicians of patients with intellectual disabilities in the Netherlands: a qualitative study

Wagemans, A., van Schrojenstein Lantman-de Valk, H., Proot, I., Metsemakers, J., Tuffrey-Wijne, I. and Curfs, L., 2013, Journal of Intellectual Disability Research (57), 4 pp 380-389, Published

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End-of-life decisions for people with intellectual disabilities, an interview study with patient representatives

Wagemans, Annemieke M.A., Van Schrojenstein Lantman-De Valk, Henny M.J., Proot, Ireen M., Metsemakers, Job, Tuffrey-Wijne, Irene and Curfs, Leopold M.G., 2013, Palliative Medicine (27), 8 pp 765-771, Published

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Palliative Care for People with Learning Disabilities Network

Tuffrey-Wijne, Irene, 2013, European Journal of Palliative Care (20), 1 pp 48-50, Published

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A new model for breaking bad news to people with intellectual disabilities

Tuffrey-Wijne, Irene, 2013, Palliative Medicine (27), 1 pp 5-12, Published

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People with intellectual disabilities who are affected by a relative or friend with cancer: a qualitative study exploring experiences and support needs

Tuffrey-Wijne, Irene, Giatras, Nikoletta, Butler, Gary and Cresswell, Amanda, 2012, European Journal of Oncology Nursing (16), 5 pp 512-519, Published

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Doing it together (DM Special Issue)

Gary, Butler, Amanda, Cresswell, Nikoletta, Giatras and Irene, Tuffrey Wijne, 2012, British Journal of Learning Disabilities (40), 2 pp 134-142, Published

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Practical approaches toward improving end-of-life care for people with intellectual disabilities: effectiveness and sustainability

Cross, Helen, Cameron, Marsaili, Marsh, Sheila and Tuffrey-Wijne, Irene, 2012, Journal of Palliative Medicine (15), 3 pp 322-326, Published

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Co-researching with people with learning disabilities: an experience of involvement in qualitative data analysis

Tuffrey-Wijne, Irene and Butler, Gary, 2010, Health Expectations (13), 2 pp 174-184, Published

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Do you provide equal care to people with learning disabilities?

Tuffrey-Wijne, Irene, 2010, Nursing Times (106) pp 8-8, Published

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People with learning disabilities who have cancer: an ethnographic study

Tuffrey-Wijne, Irene, Bernal, Jane, Hubert, Jane, Butler, Gary and Hollins, Sheila, 2009, British Journal of General Practice (59), 564 pp 503-509, Published

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