Professor Irene Tuffrey-Wijne

About

I qualified as a nurse in Amsterdam (The Netherlands) and moved to London in 1985, where I lived and worked in the L'Arche Community with people with intellectual disabilities for eight years. I then worked as a hospice nurse for eight years (Trinity Hospice, Clapham) before moving into academia in 2001. I worked at St George's University of London and moved to the Joint Faculty with Kingston University in 2012. 

I have led a programme of research focusing on intellectual disability, cancer and palliative care, with a particular interest in communication of bad news and in service development. I completed my PhD on this topic in 2007, awarded by Maastricht University (Netherlands). Inclusion of people with intellectual disabilities as co-researchers is a key part of my work. I was given the world's first chair in Intellectual Disability & Palliative Care in 2018. 

Academic responsibilities

Professor of Intellectual Disability and Palliative Care

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

Research

2016 - 2018 Baily Thomas Charitable Trust

2015 - 2016 South West London Academic, Health and Social Care System

2011 - 2013 NIHR-SDO

2009 - 2011 Macmillan Cancer Support

2009 - 2011 BUPA Foundation

2008 - 2009 Wellcome Trust Value in People

2004 - 2006 Cancer Research UK2005 - 2005 SW London and St George's NHS Mental Health Trust

2005 - 2005 Cancer Research UK

2004 - 2004 Awards for All

Awards

Postdoctoral Research Award 2017, European Association of Palliative Care

RCN Research Society Akinsanya Award 2009 (Special Commendation) For innovation in doctoral nursing research

Best Poster Award, 9th Conference for Clinical Ethic Committees, Oxford, 2009

Best Poster Prize, European Congress of the International Association for the Scientific Study of Intellectual Disabilities, 2006

First Prize, Macmillan Cancer Relief/International Journal of Palliative Nursing Awards 2005, ‘Educationalist of the year'

Research student supervision

Publications

Number of items: 50.

Article

Noorlandt, H. W., Echteld, M. A., Tuffrey-Wijne, I., Festen, D. A. M., Vrijmoeth, C., van der Heide, A. and Korfage, I. J. (2020) Shared decision-making with people with intellectual disabilities in the last phase of life : a scoping review. Journal of Intellectual Disability Research, 64(11), pp. 881-894. ISSN (print) 0964-2633

Tuffrey-Wijne, Irene, Finlayson, Janet, Bernal, Jane, Taggart, Laurence, Lam, Claire Kar Kei and Todd, Stuart (2020) 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. Journal of Applied Research in Intellectual Disabilities, 33(5), pp. 927-938. ISSN (print) 1360-2322

Adam, Emily, Sleeman, Katherine E, Brearley, Sarah, Hunt, Katherine and Tuffrey-Wijne, Irene (2020) The palliative care needs of adults with intellectual disabilities and their access to palliative care services : a systematic review. Palliative Medicine, 34(8), pp. 1006-1018. ISSN (print) 0269-2163

Tuffrey-Wijne, Irene, Lam, Claire Kar Kei, Marsden, Daniel, Conway, Bernie, Harris, Claire, Jeffrey, David, Jordan, Leon, Keagen-Bull, Richard, McDermott, Michelle, Newton, Dan and Stapelberg, Diane (2020) Developing a training course to teach research skills to people with learning disabilities : "It gives us a voice. We CAN be researchers!". British Journal of Learning Disabilities, ISSN (print) 1354-4187 (Epub Ahead of Print)

Lam, Claire Kar Kei, Bernal, Jane, Finlayson, Janet, Todd, Stuart, Taggart, Laurence, Boaz, Annette and Tuffrey-Wijne, Irene (2020) Maximising engagement and participation of intellectual disability (ID) staff in research : insights from conducting a UK-wide survey. Journal of Intellectual Disabilities, ISSN (print) 1744-6295 (Epub Ahead of Print)

Kenten, Charlotte, Wray, Jo, Gibson, Faith, Russell, Jessica, Tuffrey-Wijne, Irene and Oulton, Kate (2019) To flag or not to flag : identification of children and young people with learning disabilities in English hospitals. Journal of Applied Research In Intellectual Disabilities, 32(5), pp. 1176-1183. ISSN (print) 1360-2322

Tuffrey-Wijne, Irene, Curfs, Leopold, Finlay, Ilora and Hollins, Sheila (2019) "Because of his intellectual disability, he couldn't cope." Is euthanasia the answer? Journal of Policy and Practice in Intellectual Disabilities, 16(2), pp. 113-116. ISSN (print) 1741-1122

Oulton, Kate, Wray, Jo, Hassiotis, Angela, Kenten, Charlotte, Russell, Jessica, Tuffrey-Wijne, Irene, Whiting, Mark and Gibson, Faith (2019) Learning disability nurse provision in children's hospitals : hospital staff perceptions of whether it makes a difference. BMC Pediatrics, 19(192), ISSN (online) 1471-2431

Tuffrey-Wijne, Irene and Davidson, Jason (2018) Excellence in palliative and end-of-life care provision for people with intellectual disability. International Journal of Palliative Nursing, 24(12), pp. 598-610. ISSN (print) 1357-6321

Oulton, Kate, Gibson, Faith, Carr, Lucinda, Hassiotis, Angela, Jewitt, Carey, Kenten, Charlotte, Russell, Jessica, Whiting, Mark, Tuffrey-Wijne, Irene and Wray, Jo (2018) 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. BMC Health Services Research, 18(203), ISSN (online) 1472-6963

Tuffrey-Wijne, Irene, Curfs, Leopold, Finlay, Ilora and Hollins, Sheila (2018) 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). BMC Medical Ethics, 19(17), ISSN (online) 1472-6939

Tuffrey-Wijne, Irene, Rose, Tracey, Grant, Robert and Wijne, Astrid (2017) Communicating about death and dying : developing training for staff working in services for people with intellectual disabilities. Journal Of Applied Research In Intellectual Disabilities, 30(6), pp. 1099-1110. ISSN (print) 1360-2322

Tuffrey-Wijne, I. and Rose, T. (2017) 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. Journal Of Intellectual Disability Research, 61(8), pp. 727-736. ISSN (print) 0964-2633

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) Do-Not-Attempt-Resuscitation orders for people with intellectual disabilities : dilemmas and uncertainties for ID physicians and trainees. The importance of the deliberation process. Journal Of Intellectual Disability Research, 61(3), pp. 245-254. ISSN (print) 0964-2633

Rose, Tracey and Tuffrey-Wijne, Irene (2017) The benefits of gaining research experience through a secondment. Learning Disability Practice, 20(1), pp. 36-39. ISSN (print) 1465-8712

Oulton, Kate, Wray, Jo, Carr, Lucinda, Hassiotis, Angela, Jewitt, Carey, Kerry, Sam, Tuffrey-Wijne, Irene and Gibson, Faith (2016) 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. BMJ Open, 6, e012333. ISSN (online) 2044-6055

Tuffrey-Wijne, Irene, Abraham, Elisabeth, Goulding, Lucy, Giatras, Nikoletta, Edwards, Christine, Gillard, Steve and Hollins, Sheila (2016) Role confusion as a barrier to effective carer involvement for people with intellectual disabilities in acute hospitals : findings from a mixed-method study. Journal of Advanced Nursing, 72(11), pp. 2907-2922. ISSN (print) 0309-2402

Tuffrey-Wijne, Irene, Curfs, Leopold and Deliens, Luc (2016) Developing research, policy and practice in palliative care for people with intellectual disabilities will benefit everyone. Palliative Medicine, 30(7), pp. 613-615. ISSN (print) 0269-2163

Tuffrey-Wijne, I, McLaughlin, D, Curfs, L, Dusart, A, Hoenger, C, McEnhill, L, Read, S, Ryan, K, Satge, D, Strasser, B, Westergard, B and Oliver, D (2016) 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). Palliative Medicine, 30(5), pp. 446-455. ISSN (print) 0269-2163

Tuffrey-Wijne, Irene, Wicki, Monika, Heslop, Pauline, McCarron, Mary, Todd, Stuart, Oliver, David, De Veer, Anke, Ahlstrohm, Gerd, Schaper, Sabine, Hynes, Geraldyn, O'Farrell, Janet, Adler, Judith, Riese, Frederik and Curfs, Leopold (2016) Developing research priorities for palliative care of people with intellectual disabilities in Europe : a consultation process using nominal group technique. BMC Palliative Care, 15(36), ISSN (online) 1472-684X

Tuffrey-Wijne, Irene [Reviewer] (2016) 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. eHospice: Palliative Care News, Views and Inspiration from around the World,

Tuffrey-Wijne, Irene (2016) Palliative care for people with intellectual disabilities : the EAPC White Paper in a nutshell. European Journal of Palliative Care, 23(1), pp. 45-47. ISSN (print) 1352-2779

Wagemans, A. M. A., van Schrojenstein Lantman-de Valk, H. M. J., Proot, I. M., Metsemaker, J., Tuffrey-Wijne, I. and Curfs, L. M. G. (2015) End-of-life decision-making for people with intellectual disability from the perspective of nurses. Journal Of Policy And Practice In Intellectual Disabilities, 12(4), pp. 294-302. ISSN (print) 1741-1122

Tuffrey-Wijne, Irene and Watchman, Karen (2015) Breaking bad news to people with learning disabilities and dementia. Learning Disability Practice, 18(7), pp. 16-23. ISSN (print) 1465-8712

Tuffrey-Wijne, Irene, Goulding, Lucy, Gordon, Vanessa, Abraham, Elisabeth, Giatras, Nikoletta, Edwards, Christine, Gillard, Steve and Hollins, Sheila (2014) The challenges in monitoring and preventing patient safety incidents for people with intellectual disabilities in NHS acute hospitals : evidence from a mixed-methods study. BMC Health Services Research, 14(432), ISSN (online) 1472-6963

Tuffrey-Wijne, Irene, Goulding, Lucy, Giatras, Nikoletta, Abraham, Elisabeth, Gillard, Steve, White, Sarah, Edwards, Christine and Hollins, Sheila (2014) 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. BMJ Open, 4(4), e004606. ISSN (online) 2044-6055

Hollins, Sheila and Tuffrey-Wijne, Irene (2014) Authors' reply. British Journal of Psychiatry, 205(5), p. 412. ISSN (print) 0007-1250

Hollins, Sheila and Tuffrey-Wijne, Irene (2014) Improving hospital care for patients with intellectual disabilities. British Journal of Hospital Medicine, 75(6), pp. 304-305. ISSN (print) 1750-8460

Tuffrey-Wijne, Irene and Hollins, Sheila (2014) Preventing 'deaths by indifference': identification of reasonable adjustments is key. British Journal of Psychiatry, 205(2), pp. 86-87. ISSN (print) 0007-1250

Tuffrey-Wijne, I., Giatras, N., Goulding, L., Abraham, E., Fenwick, L., Edwards, C. and Hollins, S. (2013) 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. Health Services and Delivery Research, 1(13), ISSN (print) 2050-4349

Hollins, S. and Tuffrey-Wijne, I. (2013) Meeting the needs of patients with learning disabilities. BMJ, 346(f3421), ISSN (online) 1756-1833

Tuffrey-Wijne, Irene, Giatras, Nikoletta, Butler, Gary, Cresswell, Amanda, Manners, Paula and Bernal, Jane (2013) Developing guidelines for disclosure or non-disclosure of bad news around life-limiting illness and death to people with intellectual disabilities. Journal Of Applied Research In Intellectual Disabilities, 26(3), pp. 231-242. ISSN (print) 1360-2322

Wagemans, A., van Schrojenstein Lantman-de Valk, H., Proot, I., Metsemakers, J., Tuffrey-Wijne, I. and Curfs, L. (2013) The factors affecting end-of-life decision-making by physicians of patients with intellectual disabilities in the Netherlands: a qualitative study. Journal of Intellectual Disability Research, 57(4), pp. 380-389. ISSN (print) 0964-2633

Tuffrey-Wijne, Irene (2013) A new model for breaking bad news to people with intellectual disabilities. Palliative Medicine, 27(1), pp. 5-12. ISSN (print) 0269-2163

Wagemans, Annemieke A. M., Van Schrojenstein Lantman-de Valk, Henny M. J., Proot, Ireen M., Metsemakers, Job, Tuffrey-Wijne, Irene and Curfs, Leopold M. G. (2013) End-of-life decisions for people with intellectual disabilities, an interview study with patient representatives. Palliative Medicine, 27(8), pp. 765-771. ISSN (print) 0269-2163

Tuffrey-Wijne, Irene (2013) Palliative Care for People with Learning Disabilities Network. European Journal of Palliative Care, 20(1), pp. 48-50. ISSN (print) 1352-2779

Tuffrey-Wijne, Irene, Giatras, Nikoletta, Butler, Gary and Cresswell, Amanda (2012) People with intellectual disabilities who are affected by a relative or friend with cancer: a qualitative study exploring experiences and support needs. European Journal of Oncology Nursing, 16(5), pp. 512-519. ISSN (print) 1462-3889

Butler, Gary, Cresswell, Amanda, Giatras, Nikoletta and Tuffrey-Wijne, Irene (2012) Doing it together (DM Special Issue). British Journal of Learning Disabilities, 40(2), pp. 134-142. ISSN (print) 1354-4187

Cross, Helen, Cameron, Marsaili, Marsh, Sheila and Tuffrey-Wijne, Irene (2012) Practical approaches toward improving end-of-life care for people with intellectual disabilities: effectiveness and sustainability. Journal of Palliative Medicine, 15(3), pp. 322-326. ISSN (print) 1096-6218

Tuffrey-Wijne, Irene and Butler, Gary (2010) Co-researching with people with learning disabilities: an experience of involvement in qualitative data analysis. Health Expectations, 13(2), pp. 174-184. ISSN (print) 1369-6513

Tuffrey-Wijne, Irene (2010) Do you provide equal care to people with learning disabilities? Nursing Times, 106(31), p. 8.

Tuffrey-Wijne, Irene, Bernal, Jane, Hubert, Jane, Butler, Gary and Hollins, Sheila (2009) People with learning disabilities who have cancer: an ethnographic study. British Journal of General Practice (BJGP), 59(564), pp. 503-509. ISSN (print) 0960-1643

Book

Tuffrey-Wijne, Irene (2013) How to break bad news to people with intellectual disabilities. London, U.K. : Jessica Kingsley. 189p. ISBN 9781849052801

Book Section

Tuffrey-Wijne, Irene and Wilson, Jean (2020) Death and dying. In: Heslop, Pauline and Hebron, Crispin, (eds.) Promoting the health and well-being of people with learning disabilities. Cham, Switzerland : Springer. pp. 107-124. ISBN 9783030434878

Tuffrey-Wijne, Irene (2015) Cancer and intellectual disability. In: Wyatt, Debbie and Hulbert-Williams, Nicholas, (eds.) Cancer and cancer care. London, U.K. : SAGE. pp. 143-158. ISBN 9781446256282

Tuffrey-Wijne, Irene (2014) Palliative care to people with intellectual disabilities: developments in the United Kingdom and beyond. In: Bruhn, Ramona and Strasser, Benjamin, (eds.) Palliative Care fur Menschen mit geistiger Behinderun: Interdisziplinare Perspektiven fur die Begleitung am Lebensende. Stuttgart : Kohlhammer. pp. 264-268. ISBN 9783170234536

Tuffrey-Wijne, Irene and Watchman, Karen (2014) Sharing the diagnosis of dementia: breaking bad news to people with an intellectual disability. In: Watchman, Karen, (ed.) Intellectual disability and dementia: research into practice. London : Jessica Kingsley Publishers. pp. 184-203. ISBN 9781849054225

Monograph

Tuffrey-Wijne, Irene and McLaughlin, Dorry (2015) Consensus norms for palliative care of people with intellectual disabilities in Europe: EAPC White Paper. (Other) Milan, Italy : European Association of Palliative Care.

Bekkema, Nienke, Tuffrey-Wijne, Irene, Wagemans, Annemieke, Hertogh, Cees, Francke, Anneke and de Veer, Anke (2015) Decision-making about the best place of palliative care for people with intellectual disabilities: a guide for care staff and healthcare professionals providing palliative care for people with intellectual disabilities. (Project Report) Utrecht, The Netherlands : NIVEL. 20 p. ISBN 9789461223333

Database or Web Resource

Tuffrey-Wijne, Irene (2012) Breaking bad news.

This list was generated on Wed Nov 25 06:17:21 2020 GMT.