Sarah Gibson is a Research Associate at Kingston University. She is co-managing the whole Victoria and Stuart Project.

 

Sarah has been undertaking research in health and social care, working for and with universities, NHS Trusts and Mental health charities for 25 years. She’s been a Service User/Survivor Researcher in Mental Health for 18 years specializing in qualitative research into Peer Support, Public and Patient involvement in Research and Coproduction of knowledge. Sarah is now very pleased to be working with research colleagues with learning disabilities and so many researchers and advisors with such a broad range of expertise on this project. Sarah has a brother and friends with Learning disabilities through her church.

 

She is married to a church pastor and home educating mother to a wonderful teenage daughter. Sarah is looking forward to producing wonderful resources to support people with learning disabilities plan for the ends of their lives.

Leon Jordan, who has a learning disability, is a Research Assistant on the Victoria and Stuart Project. Leon will be involved in all parts of the project, including designing and running focus groups, analysing data, and running co-design groups.

 

Leon is part of the GRASSroots where he discusses about death and dying and how if affects the loved ones of the person about to take that journey and what it entails. He took part in a Research course at St George’s University where he learnt about what research is and the preparatory work is needed and how we put it into practice.

 

Leon is also a writer. He writes poems, songs, stories and life quotes. He is now exploring playwriting too.

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Jo Giles is a Research Assistant and support worker at Kingston University. Jo supports Leon and Amanda in their Research Assistant roles on the Victoria and Stuart project. She also works with Richard in his role as Research Assistant on other research projects and contributes to the team herself as a Research Assistant. Jo has worked with people with a learning disability for many years in a range of different roles. She is also an End-of-Life Doula.

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Rhidian Hughes is Chief Executive at the Voluntary Organisations Disability Group (VODG). The group brings together not for profit organisations that support more than a million disabled people to live full independent lives.

 

Prior to joining VODG Rhidian’s career spanned a range of senior research, regulation and consultancy roles. Earlier in his career Rhidian held academic appointments, leading programmes of social policy research, including in palliative care. Rhidian was educated at the University of York where he also earned his Doctorate.

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Faye Gardiner is the Project Lead for Dimensions involvement in The Victoria and Stuart Project, where she will be working on the Evaluation phase, alongside Sarah Swindells.

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Prior to her role at Dimensions, Faye worked in a local authority developing physical activity, health, and wellbeing programmes. This included work with the charity Menphys to improve wellbeing and support networks for children with learning disabilities and their families, through implementing support play groups. 

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She has also worked as a teaching assistant in a Special Education Needs school, where she helped assist children with Learning Disabilities and/or Autism not only with their education, but also to get the right support to make their own choices. Faye is passionate about ensuring people with Learning disabilities have a voice and control over planning for their own future.

Andrea Bruun is a Research Associate at Kingston University. She is co-managing the whole Victoria and Stuart Project, and she is also leading the EDI strand of the project together with VODG.

 

Andrea recently finished her PhD on prognostic decision-making within hospice multidisciplinary teams at the Marie Curie Palliative Care Research Department at UCL. Throughout her studies at UCL, she has been involved with several projects within the palliative care field.

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Andrea has a background in Linguistics from Aarhus University, Denmark. She is particularly interested in social interaction and is specialised in the methods of Conversation Analysis. 

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This is David Jeffrey, he is a Research Assistant on the Victoria and Stuart Project. David is a man with a learning disability. David is involved in analysing data and runing the All Together Groups.

 

David was part of the Advisory Group on the "Talking about dying" project and a project on how people use Easy Read information. David was part of GRASSroots where people talk about death and dying. David completed a research course at Kingston University. David has worked with The Mental Health Foundation on different projects like hate crime against people with a learning disability. David was on TV campaigning for people with a learning disability to have earlier coronavirus vaccinations. He has advised Paradigm on making good Easy Read information and was also very involved with upgrading the website Easyhealth.

 

David is an Elvis Presley fan and collector of memorabilia. He also likes playing video games, listening to music and going to see theatre shows like Tina Turner and School of Rock.

Lorna Rouse is a Research Associate in the School of Health, Wellbeing and Social Care, Faculty of Wellbeing, Education and Language Studies, at The Open University (OU). She has previously worked on projects in healthcare and in the field of learning disabilities including exploring the quality of diabetes care for people with learning disabilities.

 

Lorna will be supporting Work Package 1 of The Victoria & Stuart Project, focusing on discovering what resources and approaches to end-of-life care planning are currently being used for people with learning disabilities.

Meg has worked for MacIntyre, a national charity who provide support for children, young people, and adults who live with a learning disability and/or autism, for the past 5 years. Meg works in all areas of best practice support and is an experienced learning support worker, with a particular focus of supporting people with a learning disability and/or autism in work. Meg also participates in a task group tackling health inequalities and, is a proud member of The Co-Pro group - MacIntyre’s co-production and self-advocacy working group. Meg will lead on MacIntyre’s involvement across all parts of the Victoria and Stuart Project with the support of Nicola Payne.

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“My passion is for everyone to live a life that makes sense to them and supporting people to feel empowered to make choices and to have control in what living well means to them and what good end of life care can be like. I’m also excited by co-production valuing everyone’s thoughts, skills and talents in co-producing something effective, accessible and sustainable.”