Key note speaker
Dr Daniel Satgé
Daniel Satgé is MD, Pathologist, and PhD in neurosciences, currently in the Desbrest Institute of Epidemiology and Public Health from Montpellier University, France. He has been working for more than 20 years on cancer in people with intellectual disabilities and particularly on cancer in children and adults with Down syndrome. He reported the protection of people with Down syndrome against particular cancers, breast, brain etc… In 2012 he co-founded the Oncodéfi association, of which he is currently the director. Within Oncodéfi, which is dedicated to the optimal management of cancers in people with intellectual disabilities, he works in particular to bring together the very scattered documentation on the subject (which serves as the basis for all actions), to coordinate research aimed at improving patient care, and deploying actions in the field to promote care. Daniel Satgé co-edited in 2011 a book on cancers in people with intellectual disabilities. He also edited five book chapters and 115 medical articles. He co-organized two international symposia in 2014 and 2018 and a national congress in 2021 in Montpellier on cancer in people with intellectual disability. His research focuses on the epidemiology of cancers in people with intellectual disabilities, on diagnostic modalities, diagnostic delays, on barriers to cancer care and on treatment difficulties. For his actions and work, the French National Academy of Medicine awarded him the 2019 cancer prize.
Dr Raoul Hennekam
Raoul Hennekam received his specialty trainings in Paediatrics and in Clinical Genetics at Utrecht University. He was appointed as professor of Paediatrics and of Clinical Genetics in 2002 at the Academic Medical Centre of University of Amsterdam. During the period 2005-2010 he worked in London at the Institute of Child Health and Great Ormond Street Hospital as professor of Clinical Genetics and Dysmorphology. He has subsequently worked as both professor of Paediatrics as of Translational Genetics at Amsterdam University Medical Centres. He retired on May 1, 2020.
Main scientific interests include intellectual disabilities, autism and other behavioural disturbances, aging, (paediatric) cancer, natural history studies and (molecular) dysmorphology. He is member of the national Dutch Health Council, European Research Council, chair of the scientific committee of the Brain society, member of the scientific council of the Beatrix Muscle Funds, author of 600 papers in peer-reviewed journals (H-index WoS 88) and 29 chapters in international texts, co-chair of the international Morphology Nomenclature Committee, and senior editor of the main text in Dysmorphology ‘Gorlin’s Syndromes of the Head and Neck’.
Conference Organiser: Dr Diane S Willis
Dr Diane Willis is a lecturer at the Edinburgh Napier University. She holds two professional qualifications – as an Associate Fellow of the British Psychological Association and as a registered nurse. Her primary research interest lies in the field of intellectual disability with a special interest in cancer and cancer screening. She has worked on a number of projects concerned with cancer and healthy ageing in women with learning disabilities. She is also proud to be Chair of the Board of Family Advice and Information Resource, charity that provides expert advice on welfare rights and produces information for clients in accessible formats for people with intellectual disabilities and their supporters.
She has worked with Daniel Satgé, over a number of years and is currently working with the Screening and Early Detection Team, NHS Lothian Public Health and Health Policy on work exploring cancer website. She works closely with a number of Health and social care organizations ensuring her research is practiced based. Current ongoing work in development includes the menopause in people with intellectual disability and what next after diagnosis of cancer. She is keen to collaborate with others on projects to ensure the cancer the needs of people with intellectual disabilities. are met.
Dr Maarten Cuypers
PhD is senior researcher and epidemiologist within the Intellectual Disabilities and Health group at the Radboud University medical center in Nijmegen, The Netherlands. His main expertise lies in population-based research on health and ID. He is project leader of two projects in the field of cancer and ID. One project focuses on cancer treatment and ID, and the other project focuses on cancer prevention and population screening in the ID-setting. Work in these projects is carried out within an academic collaborative consisting of the Radboudumc and six Dutch ID-care organisations.
He previously published population-based epidemiological research on disparities between Dutch individuals with ID and without in received cancer care (Cancer Medicine, 2020) and cancer-related mortality (Cancer, 2021), and a scoping review on cancer treatment and ID (The Lancet Oncology, 2022).
Other research activities of Dr Cuypers are in other ID-health related topics such as chronic illnesses, COVID-19, and mortality.
Dr. Cuypers studied Psychology (Tilburg University, The Netherlands) and Epidemiology (VU university, Amsterdam, The Netherlands). He obtained his PhD in 2018 (Tilburg University) with research on treatment decision-making in prostate cancer care and the development of an online decision aid.
Grethe Skorpen Iversen
Grethe Skorpen Iversen is a palliative care nurse specialist employed at the Regional Centre of Excellence for Palliative Care, Western Norway, at Haukeland University Hospital in Bergen, Norway. She has run a number of local and regional quality improvement projects in palliative and end-of-life care, including the three-year project; “Do you think we can manage? Palliative care for people with learning disabilities ‒ education and training for staff in community care settings”. Her special interests are care of the dying, volunteering in palliative care, and end-of-life care for persons with intellectual disabilities. Grethe has been a member of the EAPC Reference Group on Intellectual Disability since 2017.
Stine Skorpen works as a Nurse Consultant at The Norwegian National Centre for Ageing and Health, Vestfold Hospital Trust, Norway, at Intellectual Disability and Aging. She started her first project on Cancer among adults and elderly people with Intellectual Disability (ID) in 2007. She has developed easy-to-read literature for people with ID about the cancer journey. She has been involved in making an educational film about going to mammography for women with ID. She regularly works with education and training for staff in primary- and specialist health care services in Norway. She has participated and given lectures at the two previous symposiums on Cancer in People with Intellectual Disabilities in Montpellier, France. In 2018 her presentation was on the topic Hospitalisation due to cancer in adults with Intellectual Disabilities in Norway.
Together with Frambu Resource Centre for Rare Disorders in Norway, she hosted three webinars in 2021 on Cancer in People with Intellectual Disabilities. The webinars were a replacement for the Cancer Conference with workshop they were going to host in Oslo, Norway in 2020, but due to the pandemic the arrangement was canceled.
Dr Marie Kotzur
I am a research associate at the University of Glasgow with a background in health psychology and behavioural science. My work aims to improve cancer outcomes by reducing health inequalities in preventive screening and early diagnosis. Much of my research focuses on increasing screening participation. I have worked on projects to understand barriers to cancer screening participation and identify opportunities to improve bowel screening update among women in Glasgow, and I am currently involved in a trial of two interventions to support people with doing their bowel screening test. In 2021, together with Prof Katie Robb, I was awarded a Prevention and Population Research Project Award from CRUK for a 33-month project to improve access to cancer screening among people with learning disabilities. This work includes a systematic review of previous relevant initiatives and research, qualitative interviews about cancer screening with people with learning disabilities, carers, and professional stakeholders, as well as collaboration with stakeholders to identify and develop intervention approaches for future research.
Iona Stoddart Bio
Iona is the Deputy Head of Information and Engagement with Jo’s Cervical Cancer Trust, the UK’s leading cervical cancer charity. For the past 15 years Iona’s career has focussed on improving health outcomes for young people, and latterly adults who are less likely to engage with health services, within the charity sector and the NHS. Originally from the Western Isles of Scotland, Iona now lives in Glasgow and has a remit for increasing cervical screening uptake across Scotland by understanding the barriers women face when attending cervical screening and working in partnership with key groups to address these barriers. She is keen to address inequalities when it comes to accessing health services, particularly cervical screening, and enjoys working with a wide and varied group of people in this role. Iona has recently worked with women with a learning disability to co-produce new resources that aim to empower women with a learning disability to make an informed choice about participating in the national screening programme.
Suzanne is the Cervical Cancer Prevention Project Lead with Jo’s Cervical Cancer Trust based in Glasgow. With a background in health and well-being therapies, Suzanne has worked for Jo’s since 2019 within the West of Scotland Cervical Cancer Prevention Project. Through her role at Jo’s she enjoys building relationships with the community groups and delivering Cervical Cancer Prevention training. She is keen to promote Cervical Cancer Screening programme throughout Scotland and engage with women to find out about the barriers experienced in attending screening and how we can help women overcome these barriers. Co-producing our series of films about Cervical screening has been one of the highlights of our work with women with a learning disability and we look forward to continuing this work as our new project begins in June, with a focus on addressing screening inequalities in Scotland.
Kenna Campbell, Health Improvement Senior, is based in the North East locality within the Glasgow City Health and Social Care Partnership. Kenna is originally from South Uist in the Western Isles and has been working in the field of health improvement and community development for the last 18 years.
In 2018/19, Kenna was involved in managing a Learning Disability organisation to work with adults with a learning disability to adapt and co-produce a resource, raising awareness of breast and cervical cancer awareness for women. This involved working with colleagues from Waterford Institute of Technology to adapt the resource EMBRACES: ID (Early Monitoring of Breast and Cervical Cancer Signs and Screening in Intellectual Disabilities).
Professional Learning/Intellectual Disabilities and Neurodevelopmental Nursing Advisor, Autism and Learning Disabilities Team Scottish Government
I am very proud to be a Learning Disability Nurse. Our role and function is to work in partnership with people with learning disabilities and their supporters to enable and collaborate with health and care services, third sector, and integrated services, private and public agencies to meet the evolving needs of a growing population. Learning Disability nurses work with children, adults and older adults, their families/carers, staff and support teams and the wider workforce to enable each person to achieve their full potential and have a fulfilling life. Working collaboratively improves autonomy, promotes health and wellbeing and supports inclusion; enhancing lifestyles that help achieve the best health outcomes. The centenary of learning disability nursing celebrates the many different roles and functions of the learning disability nurse.
I took up post as Associate Nurse Director for Learning Disability and Mental Health Services across NHS Grampian, Clinical External Examiner University of Stirling and Chief Nurse for Transformation of Mental Health and Learning Disability Services NHS Grampian heralding a new and innovative role across HSCPs and NHS transforming services for people with learning disabilities and autistic people. I chaired the Scottish Learning Disability Nurse Leads Group until the role of Professional Learning/Intellectual Disabilities and Neurodevelopmental Nursing Advisor Autism and Learning Disabilities Team at Scottish Government and continue to represent Scotland at the UK Learning Disability Professional Senate.
Kerry Anderson QN
Kerry Anderson is a Registered Learning Disability Nurse and Queens Nurse based in NHS Grampian. Kerry is currently Nurse Consultant – Learning Disabilities, and Professional Lead for Learning Disability Nursing across three Health and Social Care Partnerships, including Orkney and Shetland. She also provides support to the Inpatient Learning Disability Specialist Services. Her Nurse Consultant role responsibilities include, development of best practice guidance and implementation of policy drivers and how evidence based research informs our care towards reducing health inequalities that many people with a learning disability experience. Influencing care to improve health outcomes for people with a learning disability, Kerry has been actively involved as clinical lead for the Scottish Learning Disability Health Check.
Additionally, she represents Scotland at the UK Learning Disability Consultant Nurse Network, is Co-Chair of the Scottish Learning Disability Lead Nurse Network and Associate Lecturer at the Robert Gordons University, Aberdeen.
Wafaa Salama (PhD, MA, BA)
Wafaa is the Project Manager, Screening and Early Detection Team, NHS Lothian Public Health and Health Policy. Wafaa has a PhD in Care and education policies from Faculty of Social Sciences and Health, Durham University, UK in June 2017. She has an extensive experience in the field of care, education, health and voluntary work both in UK and Egypt. The projects she coordinated and managed before include befriending, empowering ethnic minority women through mentoring, oral health, mental health and wellbeing. Wafaa is interested in forging a strong strategic relationship between public health and the voluntary and community sector which will make a real difference. She is involved at the moment in developing digital screening and health services and tools to enable people to manage their health and care.
Ciara Logue, Screening and Early Detection Team, NHS Lothian Public Health and Health Policy Directorate
Having worked as a clinician for 10 years and witnessing the vast inequalities in health across our population, I decided to change career paths and completed a MSc in Public Health in 2018. Since then, I have worked in NHS Lothian’s Public Health Directorate across a range of projects aimed at reducing health inequalities. My current role is a Project Manager in the Screening and Early Detection Team, which involves a variety of projects aimed at supporting increased awareness and informed decision making to take part in national screening programmes. One of my current projects is to collaboratively develop a new website for screening information that is accessible to people who have a learning disability and those who would benefit from easy read information.