Written by Rhian Fawcett and Lucy O’Reilly from VODG working on the Equality, Diversity and Inclusion focus of The Victoria & Stuart Project.

No experience highlights so poignantly our shared humanity as our approach to death. Whilst cultures may mark death in different ways – from celebrating life with bright colours to solemnly marking with black – the diverse range of people involved in The Victoria and Stuart Project are all united in their commitment and drive to call for improved end-of-life care for people with learning disabilities and their families and carers.

Here at the Voluntary Organisations Disability Group (VODG), our members’ work is focused on enabling disabled people of all ages to live the lives they choose. As part of The Victoria and Stuart Project, our role involves leading and championing Equality, Diversity and Inclusion (EDI). Alongside our project partners we are collectively seeking to ensure that our work to improve end-of-life care planning for people with learning disabilities is culturally appropriate, inclusive and accessible to all from the global majority.

We are facilitating an expert Advisory Board, whose members drawn from the global majority and include people with learning disabilities, supporters, family members and those who run and work in community, social care and health organisations. Our Advisory Board members steer our EDI activity through sharing personal experiences, insights and recommendations.

What is striking from our Advisory Board discussions is the shared humanity that brought us all together. Though coming from a wide range of perspectives, professions and experiences each member shared experiences and views that underlined the need for greater dignity and respect within health and social care settings at the end-of-life care for people with a learning disability.

Leon Jordan is a researcher and co-facilitator for the VODG Advisory board. He said:

“Death has many layers. The more we understand these layers the more we can strengthen the bonds we humans have. We are a diverse society, [wanting the best for] people who are facing death is a powerful thing which binds us all together"

Leon captures the shared goals of us all working at The Victoria and Stuart Project in ensuring a diverse range of voices and experiences are deeply embedded in our work. In doing so we can together better understand how we can support everyone with a learning disability, and their loved ones, in maximising personal choice, independence and control at the end of life.