Diane Willis

Diane Willis

Dr Diane Willis

Lecturer

Biography

I am a lecturer at Edinburgh Napier University and hold professional qualifications as a registered nurse and as a psychologist. I have held a number of posts from Research Fellow, Practice Education Facilitator, Equality Officer to lecturer. I have work in several Universities, the NHS and Non-Governmental Organisations.

My primary research interest lies in the field of intellectual disability especially inequalities in cancer care, bereavement and women’s issues. I am passionate to reduce inequalities in health and social care for those considered to be from a vulnerable community. I also have interests in mental health, welfare reform, citizenship, bereavement (more widely), health and social care workforce and creativity in the curriculum.

I am an external examiner for Sheffield Hallam University and am Chair for Family Advice and Information Resource (FAIR) and am a board member on The Society of Cancer and Cancer Screening for People with Intellectual and Developmental Disabilities.

I sit on a number of groups including the Learning Disability East Managed Care Network, Excellence in Care Academic Advisory Group and Future Nurse steering group (NHS Borders).

Themes

Esteem

Advisory panels and expert committees or witness

  • Excellence in Care (EiC) Academic Advisory Group member
  • Cancer and intellectual disability: panel member
  • Member of the Detect Cancer Early Team
  • Second symposium on Cancer in people with intellectual disability, Scientific committee.
  • Specialist adviser on cancer in PWLD, Scottish Public Services Ombudsman
  • Advised the French Human Rights Group on : Voting in people with intellectual disabilities.
  • University of Glasgow RCN International Research Conference committee member
  • Athena Swan Charter working group
  • Council of Deans interest group member for learning disability
  • Bridging the Gap working group member with NES and Changingmindz
  • Member of the working group for Care after Death

 

Conference Activity

  • Cancer Care workshop, Edinburgh: Chair and organiser with the Managed Care Network for Learning Disability
  • Organisers and Chair of Palliative care/ReSPECT on-line workshop
  • Cancer in people with learning disability, Livingston: Chair and organiser along with Managed Care Network for Learning Disability
  • Intellectual disability services from the Swedish and Scottish perspective, Edinburgh. Chair and organiser along with the Managed Care Network for Learning Disability
  • Sharing ideas in bereavement and end of life care workshop: Glasgow. Feeding back about bereavement to professionals who support people with learning disabilities.
  • Bereavement workshop: Fife. Chair and organiser along with the Managed Care Network for Learning Disability
  • Two-day workshop on Research in Learning Disability for year 1 students from two universities: Glasgow. Co-chair and organiser
  • Building momentum Student conference: Support and link for Edinburgh Napier Students.
  • Symposium on strengthening commitment to ensure people with intellectual disabilities enjoy a good life: RCN Conference. Lead for this symposium presentation
  • Invited speaker and chair of sessions: First Symposium on Cancer and cancer screening in people with intellectual disability: ONCODEF conference France
  • Mental Health and Stigma: understanding what practitioners need to engage with people with mental health problems. Steering group member.
  • Development workshop. Cancer and people with learning disabilities: Edinburgh Napier University. Organiser and Chair.
  • People with cancer and an intellectual disability: an international issue with local significance: University of Edinburgh. Facilitator at the conference
  • Post-graduate Seminar group: Edinburgh Napier University. Seminar organiser
  • Seattle Club 2003: University of Edinburgh: part of the organising committee

 

Conference/Workshop

  • Organiser and presenter: Moving forward in Cancer care for people with intellectual disabilities
  • Member of organising committee for the 2008 Postgraduate Conference

 

External Examining/Validations

  • Sheffield Hallam University
  • External Examiner for University of Lincoln BN Adult

 

Fellowships and Awards

  • Nursing Times 2020 Learning Disability category a runner up
  • A runner up Scottish Partnership in Palliative Care (SPPC) award for ‘Openness about Death’
  • Nominated for the best paper in the RCN conference 2014 on bereavement and student nurses
  • NMAHP Award – Willis, D.S., & Mack, S. £300 (3rd prize), for a proposal for a Cancer Screening Handbook: A Guide for Professionals, Carers & Service Users

 

Grant Reviewer

  • Invited reviewer for a grant submitted to the Yorkshire Cancer Research
  • Invited reviewer for a grant submitted to Cross-Border Healthcare Intervention Trials in Ireland Network.

 

Invited Speaker

  • Invited speaker: Cancer in people with intellectual disabilities, Norway.
  • Invited speaker: This is me - Wolf–hirschhorn Trust Health passports, Coventry.
  • Key speaker: The research evidence base for changing practice. Borders Education Centre. October 2018
  • A model of Breasting in women with intellectual disability. Second International Conference on Cancer and Cancer Screening in Intellectual Disability. Montpellier. October 2018.
  • Invited speaker: Build a nurse. Second International Conference on Cancer and Cancer Screening in Intellectual Disability. Montpellier. October 2018.
  • Paper: A model of Breasting in women with intellectual disability. Second International Conference on Cancer and Cancer Screening in Intellectual Disability. Montpellier. October 2018.
  • Invited speaker: Cancer in young people with intellectual disability. Second International Conference on Cancer and Cancer Screening in Intellectual Disability. Montpellier. October 2018.
  • Poster: SACT in people with intellectual disability. Second International Conference on Cancer and Cancer Screening in Intellectual Disability. Montpellier. October 2018.
  • Poster: Life death and lilies. Second International Conference on Cancer and Cancer Screening in Intellectual Disability. Montpellier. October 2018.
  • Presenter: Children and young people with intellectual disability: an overview of cancer. MCN day conference on cancer. Edinburgh. July 2018.
  • Presenter: The menopause and women with Down’s Syndrome. World Down Syndrome Conference. Glasgow. July 2018.
  • Poster: Breast cancer and women with Down Syndrome. World Down Syndrome Conference. Glasgow. July 2018.
  • Poster: Voting and the Scottish Referendum. World Down Syndrome Conference. Glasgow. July 2018.
  • Poster: Life, death and lilies. United Nations Day of Action. Edinburgh Napier University. Edinburgh. November 2017.
  • Speaker: Managing the menopause in women with intellectual disabilities. An internal Edinburgh Napier event, Edinburgh November 2017.
  • Speaker: Cancer in people with learning disability. Moving Forward in Cancer Care, Edinburgh Napier University.
  • Invited speaker: Voting and people with intellectual disability – views of paid and family carers and people with intellectual disabilities. Seattle Club. Glasgow. December 2016,
  • Paper: Who decides? Women with severe learning disabilities and mammography. 15th World Congress IASSID. Melbourne, Australia. August 2016.
  • Paper: Voting and the Scottish referendum. 15th World Congress IASSID. Melbourne, Australia. August 2016.
  • Poster: Joint working – embedding learning disability in the adult nursing curriculum. 15th World Congress IASSID. Melbourne, Australia. August 2016.
  • Poster: Bereavement issues in health and social care staff who work with people with intellectual disability. 15th World Congress IASSID. Melbourne, Australia. August 2016.
  • Poster: What influences women with learning disabilities to not to participate in breast screening? 15th World Congress IASSID. Melbourne, Australia. August 2016.
  • Poster: Mixed methods study phase I: Exploring the facilitators and barriers of screening children for autism in Oman. 15th World Congress IASSID. Melbourne, Australia. August 2016.
  • Poster: Mixed methods study phase II: The facilitators and barriers of screening children for autism in Oman. 15th World Congress IASSID. Melbourne, Australia. August 2016.
  • Poster: Sharing ideas in bereavement and end of life care workshop. Should bereavement education be compulsory? Seattle Club, Glasgow. March 2016.
  • Invited workshop: What is a learning disability. Building momentum Conference, Edinburgh.
  • Presentation: Up-date on bereavement work and resources. Bereavement workshops: Let’s talk about dying. Edinburgh and Glasgow. October, November 2015.
  • Presentation: Let’s talk about dying – exploring what health and social care staff want and need in terms of training in discussing death and dying. Workshop on Bereavement issues in people with intellectual disabilities. Edinburgh Napier University. July 2015.
  • Presenter: Reflections on cancer in health and social care. Moving forwards in Cancer care for people with intellectual disabilities. Edinburgh Napier University. July 2015.
  • Presenter: Breast screening in women with severe and profound intellectual disabilities. Moving forwards in Cancer care for people with intellectual disabilities. Edinburgh Napier University. July 2015.
  • Poster: “Love thy neighbour”: an evaluation of religion as a potential barrier to accessing sexual health services for gay and bisexual men in the West of Scotland. Improving clinical practice and service delivery: Glasgow, June 2015.
  • Presentation: Research in intellectual disability. Two-day workshop on learning disability. University of Glasgow and Glasgow Caledonian University. March 2015.
  • Invited speaker: Supporting people with intellectual disabilities through investigations and treatment. Palliative Care conference. Strathcarron Hospice, Cumbernauld. March 2015.
  • Invited Speaker: Choosing a speciality. RCN Career Conference: Glasgow
  • Paper: Dementia carers’ voices and implications for pre-registered nursing. Ageing and Society Conference. Manchester. November 2014.
  • Poster: Introducing the Society of Cancer and Intellectual and Developmental Disabilities. IASSID (International Association for the Scientific Study of Intellectual Disabilities) European conference Vienna
  • Presenter: Strengthening commitment to ensure people with intellectual disabilities enjoy a good life. Symposium. RCN International Research Conference. Glasgow. April 2014.
  • Paper: Reflect – the use of poetry in reflection. RCN International Research Conference. Glasgow. April 2014.
  • Paper: Exploring bereavement in pre-registered nursing students. RCN International Research Conference. Glasgow. April 2014.
  • Invited speaker: Considerations for breast screening in women with severe profound intellectual disabilities. First symposium on cancer and cancer screening ONCODEF conference. Montpellier, France. February 2014.
  • Invited speaker: Colorectal cancer in persons with intellectual disabilities: frequency, risks, prevention, screening. First symposium on cancer and cancer screening ONCODEF conference. Montpellier, France. February 2014.
  • Poster: Explaining health problems to people with learning disabilities: views from family and paid-carers. IASSID (International Association for the Scientific Study of Intellectual Disabilities) European conference Vienna
  • Invited speaker: Bereavement issues in pre-registered staff: implications for people with learning disabilities. Glasgow Palliative Care conference for people with learning disability. Glasgow.
  • Paper: Teaching equality, diversity and health inequalities... with help from imaginary friends! 6th Learning and Teaching Conference: University of Glasgow.
  • Paper: Embedding understanding of mental health and learning disability into the pre-registration nursing curriculum. Nurse Education Today Conference, Cambridge
  • Paper: Health inequalities - engaging the learner imagination. Nurse Education Today Conference, Cambridge
  • Presenter: The menopause, women with learning disabilities and their carers. Women’s and Children’s group, NHS Fife
  • Presentation: Menopausal issues in women with intellectual disabilities. University of Abertay, Dundee. December 2010.
  • Presenter: Cancer and people with learning disabilities. Edinburgh Napier University. July 2009.
  • Presenter: Breast screening and women with learning disabilities. Edinburgh Napier University
  • Speaker: screening and people with intellectual disability an international perspective. Screening and people with intellectual disability an international perspective. Edinburgh.
  • Presenter: Breast screening decision making in women with learning disabilities. Postgraduate Conference, Edinburgh Napier University.
  • Poster: Exploring breast screening with women with intellectual disabilities. NHS Lothian Research Day, Edinburgh Royal Infirmary
  • Paper: Exploring the menopause with women with intellectual disabilities and their carers. 13th IASSID World Congress on Intellectual Disability, South Africa.
  • Presenter: Talking to women with intellectual disabilities about participating in breast cancer screening. 13th IASSID World Congress on Intellectual Disability, South Africa.
  • Poster: Exploring breast screening participation with women with intellectual disabilities. RCN Breast Care Nursing Society Annual Conference.
  • Speaker: The menopause and women with learning disabilities. Edinburgh,
  • Speaker: An ethnographic study of decision making in relation to breast cancer screening for women with learning disabilities. Postgraduate conference, Edinburgh Napier University.
  • Paper: The menopause and women intellectual disabilities. Scottish Consortium of Learning Disability Nursing Network Conference. Scotland
  • Workshop: The menopause and people with learning disabilities. Down’s Syndrome Scotland Conference. October 2006.
  • Speaker: The menopause and women with Intellectual Disability. Special Interest Group Learning Disability, Glasgow.
  • Paper: Video analysis and intellectual disabilities. Seminar series Edinburgh Napier University.
  • Paper: Relating the experience of the menopause – women with learning disabilities and their carers. Seattle Club. Wales.
  • Paper: The effects of peer collaboration on problem solving in children with intellectual disabilities. 12th IASSID World Congress Science, Research and Methodology section. Montpellier, France. June 2004.
  • Paper: Recognition of facial emotional expression by children with Down’s syndrome. 12th IASSID World Congress, Cognition and communication section. Montpellier, France. June 2004.
  • Paper: The effect of different matching criteria on apparent group differences in children with intellectual disabilities. 12th IASSID World Congress Science, Research and Methodology section. Montpellier, France. June 2004.
  • Invited speaker: Experiences of the menopause in women with learning disabilities. Older Adults Multidisciplinary Special Interest Group. Edinburgh. March 2004.
  • Paper: Peer collaboration and problem solving in children with Down’s syndrome. XIth European Conference on Developmental Psychology. Milan. August 2003.
  • Paper: Peer collaboration in children with Down’s syndrome. XIth European Conference on Developmental Psychology. Milan. August 2003.
  • Poster: Peer collaboration in children with Down’s syndrome. International Down’s Syndrome Research Conference on Cognition and Behaviour. Denver. April 2003.
  • Paper: Peer collaboration in children with Down syndrome versus non-specific learning disability. nd UK Researchers’ Conference on Learning Disabilities. Birmingham. December 2002.
  • Paper: Following up severely learning disabled adolescents – 7 years on. East Coast of Scotland Learning Disability Forum. Dunfermline. August 2002.
  • Paper: Peer collaboration in children with Downs’ syndrome. Down’s Syndrome Research Forum. Portsmouth. May 2002.
  • Presentation: Audit in South-East Scotland – a multidisciplinary approach. Stirling Royal Hospital Audit Conference. Stirling. May 2001.
  • Paper: SIGN guidelines – breast cancer: evaluation and progress. Western General Hospital. Edinburgh. March 2001.
  • Presentation: Implementation of the SIGN guidelines: progress to date. Western General Hospital. Edinburgh. June 2000.
  • Presentation: BCG vaccination – uptake and audit. Leicester General Hospital. Leicester. July 1997.
  • Paper: A seven year follow-up of adolescents with learning disabilities. British Institute of Learning Disabilities International Conference. Manchester. September 1997.
  • Paper: Longitudinal follow-up of adolescents with learning disabilities. 10th IASSID World Congress on Intellectual Disabilities. Helsinki. July 1996.

 

Non-executive Directorship

  • Campaigns and Information Sub-group, Board, Enable Glasgow
  • Board member 2013 and Chair (2017 on wards) of Family Advice and Information Resource

 

Public/Community Engagement

  • Seeds of comfort and hope
  • Life, death Lilies 2
  • Tea and Taboo
  • Aye wi us
  • Life, Death Lilies
  • United Nations International Amnesty Day: Life death and lilies
  • ‘To absent Friends’
  • To absent friends: Bereavement Café

 

Reviewing

  • Disability and Rehabilitation
  • Journal of Psycho-Oncology
  • Springer Open
  • Scientific Committee (reviewer), International Association for the Scientific Study of Intellectual Disabilities, Melbourne.
  • Reviewer for Royal College of Nursing International Research Conference
  • Reviewer for British Journal of Learning Disabilities
  • Reviewer for Journal of Psychiatric and Mental Health Nursing

 

Visiting Positions

  • Visiting lecturer in Oman
  • Visiting lecturer

 

Date


45 results

Whorlton Hall, Winterbourne View and Ely Hospital: learning from failures of care

Journal Article
Willis, D. (2020)
Whorlton Hall, Winterbourne View and Ely Hospital: learning from failures of care. Learning Disability Practice, 23(6), https://doi.org/10.7748/ldp.2020.e2049
In the last 20 years or so there have been numerous reports, notably by the charity Mencap, that have highlighted the suboptimal care received by people with learning disabili...

Supporting people with intellectual disabilities to discuss death and bereavement

Journal Article
Willis, D., Winton, E., Jamieson, K., Muir, N., & Sandison, M. (2020)
Supporting people with intellectual disabilities to discuss death and bereavement. Learning Disability Practice, 23(2), 17-22. https://doi.org/10.7748/ldp.2020.e2045
This article describes a public engagement project on bereavement involving people with intellectual disabilities. The project was a practical application of research findings...

Qualitative exploration of the barriers to, and facilitators of, screening children for autism spectrum disorder in Oman

Journal Article
Al Maskari, T., Melville, C., Al Farsi, Y., Wahid, R., & Willis, D. (2020)
Qualitative exploration of the barriers to, and facilitators of, screening children for autism spectrum disorder in Oman. Early Child Development and Care, 190(11), 1762-1777. https://doi.org/10.1080/03004430.2018.1550084
Few studies explored the challenges associated with screening of autism spectrum disorder (ASD) in Arab and Middle Eastern countries. This study aims to explore the facilitato...

Colorectal Cancer in People with Intellectual Disabilities

Journal Article
Willis, D., Samalin, E., & Satgé, D. (2018)
Colorectal Cancer in People with Intellectual Disabilities. Oncology, 95(6), 323-336. https://doi.org/10.1159/000492077
People with intellectual disabilities (PWIDs) are now living longer; thus, the incidence of cancer within this population is increasing. Available data indicate an excess of d...

Systematic review: cultural adaptation and feasibility of screening for autism in non-English speaking countries

Journal Article
Al Maskari, T. S., Melville, C. A., & Willis, D. S. (2018)
Systematic review: cultural adaptation and feasibility of screening for autism in non-English speaking countries. International Journal of Mental Health Systems, 12(1), https://doi.org/10.1186/s13033-018-0200-8
Aim: To explore the feasibility of screening for Autism spectrum disorder in Non-English-Speaking Countries, the cultural influences and the nurses' role in the screening proc...

Widening Access; Developing an eLearning Resource for Health and Social Care Professionals Caring for Children and Young People with Cancer

Journal Article
McInally, W., Pouso Lista, M. J., McLaren, N., & Willis, D. S. (2017)
Widening Access; Developing an eLearning Resource for Health and Social Care Professionals Caring for Children and Young People with Cancer. Journal of Cancer Education, https://doi.org/10.1007/s13187-017-1284-6
Cancer is a key priority worldwide, and caring for children and young people with cancer requires a range of specific knowledge, skills and experience in order to deliver the ...

Emotion Recognition in Children With Down Syndrome: Influence of Emotion Label and Expression Intensity

Journal Article
Cebula, K. R., Wishart, J. G., Willis, D. S., & Pitcairn, T. K. (2017)
Emotion Recognition in Children With Down Syndrome: Influence of Emotion Label and Expression Intensity. American Journal on Intellectual and Developmental Disabilities, 122(2), 138-155. https://doi.org/10.1352/1944-7558-122.2.138
Some children with Down syndrome may experience difficulties in recognising facial emotions, particularly fear, but it is not clear why, nor how such skills can best be facili...

Impact of policy for Children and Young People with Cancer

Journal Article
McInally, W., & Willis, D. S. (2017)
Impact of policy for Children and Young People with Cancer. Comprehensive Child and Adolescent Nursing, 40(2), 68-70. https://doi.org/10.1080/24694193.2017.1305250
No abstract available.

An integrative review of factors influencing the use of antibiotic de-escalation in hospital setting

Presentation / Conference
Wojcik, G., Kydonaki, C., Willis, D. & Williams, B. (2017, March)
An integrative review of factors influencing the use of antibiotic de-escalation in hospital setting. Poster presented at Edinburgh Antimicrobial Resistance Research Symposium, Edinburgh
No abstract available.

Examining Dementia Caregivers’ Experiences

Journal Article
Joy, J., Whitelaw, T., Oldfather, I., & Willis, D. (2016)
Examining Dementia Caregivers’ Experiences. International Journal of Aging and Society, 7(2), 59-72. https://doi.org/10.18848/2160-1909/CGP/v07i02/59-72
There are 46.8 million people living with dementia in the world and this number is expected to rise (The World Alzheimer Report 2015). The burden on caregivers can be enormou...

Pre-Napier Funded Projects

  • HPV vaccination in young people from ethnic minority backgrounds and people with intellectual disabilities.
  • Two day workshop on learning disability
  • Supporting pre-registered nurses in bereavement care.
  • Preparing for the future, fearing the worst, support for carers and people with learning disabilities in bereavement
  • Cancer screening in learning disability
  • Development workshop on cancer and people with learning disabilities.
  • Exploring the menopause in women Down's syndrome and non specific learning disability
  • Peer collaboration in children with and without intellectual disabilities.
  • Menopause in women with learning disability

Current Post Grad projects

Non-Napier PhD or MSc by Research supervisions

  • A qualitative study exploring parents’ experience of their child’s transition from children’s to adult services
  • Love Thy Neighbour”: A service review exploring religion as a potential barrier to accessing sexual health services for gay and bisexual Men in the West of Scotland.
  • Herpes Simplex Virus: To disclose or not to disclose. An exploration of the multi-disciplinary team’s role in advising patients about disclosure when diagnosed with genital herpes simplex virus (HSV).
  • A mixed methods study exploring the barriers and facilitators of screening for autism spectrum disorder in Oman
  • ace and sexual Health in University students