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 an honorary contract with NHS Borders. My previous experience ranges from posts as a 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 welfare reform, bereavement (more widely), health and social care workforce and using the arts to support my work.

My work on the menopause in women with intellectual disabilities contributed to the NICE guidelines NG96: Care and support of people growing older with learning disabilities and has been introduced as a question in the Annual health checks checks for people with learning disabilities for the first time. With colleagues in practice we are also currently exploring further work in this area and exploring grants.

My work on cancer and cancer screening in people with intellectual disabilities has provided the definitive literature reviews in this area and my research has contributed to the knowledge. Working with the Screening and Early Detection Team, NHS Lothian Public Health and Health Policy we have undertaken work exploring informed choice and access to cancer screening services for people with intellectual disabilities and those from the Black and ethnic communities. This work lead on to developing an an accessible screening website.
Diane also organised an international conference: The 3rd Symposium on Cancer and cancer screening in people with intellectual disabilities at Edinburgh Napier University and been on the committees of previous International Symposiums.

As part of the cancer journey Diane also explored supporting people with intellectual disabilities to discuss death and dying through her work on Life, Death and Lilies. This was a public engagement project to be more open to discussing death and dying. Further funding for a film was secured about how to discuss death and dying and highlighted how people with intellectual disabilities experience death using an arts approach to explain their feelings and experience. This has led on to submitting a grant for a PhD student. With another small grant Diane developed two easy read books with Family Advice and Information Resource.

I 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 am also a volunteer swimming instructor and hold a professional dive licence.

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.
  • Athena Swan Charter working group
  • University of Glasgow RCN International Research Conference committee member
  • Council of Deans interest group member for learning disability
  • Member of the working group for Care after Death
  • Bridging the Gap working group member with NES and Changingmindz

 

Conference Organising Activity

  • Organisers and Chair of Palliative care/ReSPECT on-line workshop
  • Cancer Care workshop, Edinburgh: Chair and organiser with the Managed Care Network for Learning Disability
  • 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
  • Building momentum Student conference: Support and link for Edinburgh Napier Students.
  • Two-day workshop on Research in Learning Disability for year 1 students from two universities: Glasgow. Co-chair and organiser
  • Invited speaker and chair of sessions: First Symposium on Cancer and cancer screening in people with intellectual disability: ONCODEF conference France
  • Symposium on strengthening commitment to ensure people with intellectual disabilities enjoy a good life: RCN Conference. Lead for this symposium presentation
  • 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.
  • Invited speaker: Cancer in young people with intellectual disability. Second International Conference on Cancer and Cancer Screening in Intellectual Disability. Montpellier. October 2018.
  • Presenter: The menopause and women with Down’s Syndrome. World Down Syndrome Conference. Glasgow. July 2018.
  • Presenter: Children and young people with intellectual disability: an overview of cancer. MCN day conference on cancer. Edinburgh. July 2018.
  • Poster: Breast cancer and women with Down Syndrome. World Down Syndrome Conference. Glasgow. July 2018.
  • 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.
  • Poster: SACT in people with intellectual disability. Second International Conference on Cancer and Cancer Screening in Intellectual Disability. Montpellier. October 2018.
  • Poster: Voting and the Scottish Referendum. World Down Syndrome Conference. Glasgow. July 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.
  • Poster: Life death and lilies. Second International Conference on Cancer and Cancer Screening in Intellectual Disability. Montpellier. October 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.
  • 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.
  • Invited workshop: What is a learning disability. Building momentum Conference, Edinburgh.
  • 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: 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: Bereavement issues in health and social care staff who work with people with intellectual disability. 15th World Congress IASSID. Melbourne, Australia. August 2016.
  • Paper: Who decides? Women with severe learning disabilities and mammography. 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.
  • 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,
  • Presenter: Reflections on cancer in health and social care. 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.
  • 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.
  • Invited speaker: Supporting people with intellectual disabilities through investigations and treatment. Palliative Care conference. Strathcarron Hospice, Cumbernauld. March 2015.
  • Presentation: Up-date on bereavement work and resources. Bereavement workshops: Let’s talk about dying. Edinburgh and Glasgow. October, November 2015.
  • Presentation: Research in intellectual disability. Two-day workshop on learning disability. University of Glasgow and Glasgow Caledonian University. March 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: Strengthening commitment to ensure people with intellectual disabilities enjoy a good life. Symposium. RCN International Research Conference. Glasgow. April 2014.
  • Paper: Dementia carers’ voices and implications for pre-registered nursing. Ageing and Society Conference. Manchester. November 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.
  • Invited Speaker: Choosing a speciality. RCN Career Conference: Glasgow
  • Paper: Exploring bereavement in pre-registered nursing students. RCN International Research Conference. Glasgow. April 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
  • 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
  • Paper: Reflect – the use of poetry in reflection. 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.
  • Paper: Embedding understanding of mental health and learning disability into the pre-registration nursing curriculum. Nurse Education Today Conference, Cambridge
  • Paper: Teaching equality, diversity and health inequalities... with help from imaginary friends! 6th Learning and Teaching Conference: University of Glasgow.
  • 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: 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: Breast screening and women with learning disabilities. Edinburgh Napier University
  • Presenter: Cancer and people with learning disabilities. Edinburgh Napier University. July 2009.
  • Paper: Exploring the menopause with women with intellectual disabilities and their carers. 13th IASSID World Congress on Intellectual Disability, South Africa.
  • Poster: Exploring breast screening with women with intellectual disabilities. NHS Lothian Research Day, Edinburgh Royal Infirmary
  • 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.
  • Presenter: Breast screening decision making in women with learning disabilities. Postgraduate Conference, Edinburgh Napier University.
  • Speaker: screening and people with intellectual disability an international perspective. Screening and people with intellectual disability an international perspective. Edinburgh.
  • 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
  • Paper: Video analysis and intellectual disabilities. Seminar series Edinburgh Napier University.
  • Speaker: The menopause and women with Intellectual Disability. Special Interest Group Learning Disability, Glasgow.
  • Workshop: The menopause and people with learning disabilities. Down’s Syndrome Scotland Conference. October 2006.
  • Paper: Relating the experience of the menopause – women with learning disabilities and their carers. Seattle Club. Wales.
  • 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 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: 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: 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.
  • Paper: Peer collaboration in children with Down syndrome versus non-specific learning disability. nd UK Researchers’ Conference on Learning Disabilities. Birmingham. December 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.
  • Paper: A seven year follow-up of adolescents with learning disabilities. British Institute of Learning Disabilities International Conference. Manchester. September 1997.
  • Presentation: BCG vaccination – uptake and audit. Leicester General Hospital. Leicester. July 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
  • Aye wi us
  • Life, death Lilies 2
  • Tea and Taboo
  • United Nations International Amnesty Day: Life death and lilies
  • Life, Death Lilies
  • ‘To absent Friends’
  • To absent friends: Bereavement Café

 

Reviewing

  • Journal of Psycho-Oncology
  • Disability and Rehabilitation
  • 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


47 results

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...

Young men with intellectual disabilities’ constructions of the human papillomavirus and vaccine

Journal Article
Carnegie, E., Whittaker, A., Gray Brunton, C., Harding, S., Hilton, S., Hogg, R., …Willis, D. (2016)
Young men with intellectual disabilities’ constructions of the human papillomavirus and vaccine. European Journal of Public Health, 26(suppl_1), ckw169.050. doi:10.1093/eurpub/ckw169.050
Scotland is one European country offering a national schoolbased HPV vaccination programme to at least one age-cohort of females, however it does not include young men. A subs...

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

Journal Article
Caulfield, P., & Willis, D. (2017)
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. International Journal of STD and AIDS, 28(8), 750-755. https://doi.org/10.1177/0956462416665730
The first UK prosecution for genital herpes simplex virus (HSV) transmission in 2011 attracted strong criticism from medical experts. To address the dearth of research on the ...

Young men with intellectual disabilities, the HPV vaccine, and constructions of sexual health risk

Presentation / Conference
Carnegie, E., Gray Brunton, C., Whittaker, A., Kennedy, C., Hogg, R., Harding, S., …Willis, D. (2016, August)
Young men with intellectual disabilities, the HPV vaccine, and constructions of sexual health risk. Paper presented at The 30th joint European Health Psychology Society Conference/British Psychology Society Division of Health Psychology
Background: The Human Papilloma Virus (HPV) Vaccine was introduced internationally in order to provide a vaccine against common strands of the HPV virus which is implicated in...

Voting and the Scottish referendum: perspectives of people with intellectual disabilities and their family and paid carers

Journal Article
Willis, D. S., McGlade, I., Gallagher, M., & Menabney, C. (2016)
Voting and the Scottish referendum: perspectives of people with intellectual disabilities and their family and paid carers. Disability and Society, 31(7), 914-928. https://doi.org/10.1080/09687599.2016.1211002
Voting is a human right for every citizen yet many people with intellectual disabilities do not vote or have little support to exercise their right to vote. This article explo...

The human papillomavirus and HPV vaccine: accounts from young people from Black, Asian and Minority Ethnic groups in Scotland aged 16-26 years

Presentation / Conference
Carnegie, E., Whittaker, A., Gray-Brunton, C., Kennedy, C., Hogg, R., Pow, J., …Hanif, N. (2016, April)
The human papillomavirus and HPV vaccine: accounts from young people from Black, Asian and Minority Ethnic groups in Scotland aged 16-26 years. Paper presented at RCN International Nursing Research Conference 2016
Background: School nurses play important roles in delivering human papillomavirus (HPV) vaccination programme in United Kingdom. International research indicates lower HPV vac...

Failure of care in mental health trust: Déjà vu in terms of treatment of people with learning disabilities?

Journal Article
Willis, D. (2016)
Failure of care in mental health trust: Déjà vu in terms of treatment of people with learning disabilities?. BMJ, 352, ISSN 0959-8138
No abstract available.

What influences women with intellectual disabilities to attend breast screening? Experiences of women who have and have not participated

Journal Article
Willis, D. S., & Willis, D. (2016)
What influences women with intellectual disabilities to attend breast screening? Experiences of women who have and have not participated. British Journal of Learning Disabilities, 44(4), (269-276). ISSN 1354-4187
Background: Despite breast screening in Britain being free to all women within the allotted age range, uptake of this service is often poor in women with intellectual disabili...

Working with the disabled patient: Exploring student nurses views for curriculum development using a swot analysis.

Journal Article
Willis, D., & Thurston, M. (2015)
Working with the disabled patient: Exploring student nurses views for curriculum development using a swot analysis. Nurse Education Today, 35, 383-387. https://doi.org/10.1016/j.nedt.2014.10.013
Summary Background Increased longevity will mean an increase in people presenting with cognitive and physical disabilities, such as sight loss or dementia. The Patient Right...

Pre-Napier Funded Projects

  • Two day workshop on learning disability
  • HPV vaccination in young people from ethnic minority backgrounds and people with intellectual disabilities.
  • 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.
  • Peer collaboration in children with and without intellectual disabilities.
  • Exploring the menopause in women Down's syndrome and non specific learning disability
  • Menopause in women with learning disability

Current Post Grad projects

Non-Napier PhD or MSc by Research supervisions

  • A mixed methods study exploring the barriers and facilitators of screening for autism spectrum disorder in Oman
  • 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.
  • A qualitative study exploring parents’ experience of their child’s transition from children’s to adult services
  • 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).
  • ace and sexual Health in University students