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We're living well, but dying matters
  1. Bradshaw Austin1 and
  2. Black Joanna2
  1. 1CHANGE, Leeds, UK
  2. 2NCPC, London, UK


Introduction This innovative and ground breaking DVD will help people with learning disabilities become more comfortable around talking about dying.

People with learning disabilities are often marginalised and excluded from conversations about their own and others' wishes around dying, death and bereavement and this can cause great pain and anger. We want to change this.

Aims The DVD aims to:

  • Demonstrate that people with learning disabilities can be fully involved in talking about dying, understanding choice and planning for things during their life.

  • Inspire other people with learning disabilities to make their choices and preferences clear about issues around dying, death and bereavement.

Methods The DVD includes the views, ideas and hopes of people with a learning disability, and other people involved in their lives. The project team devised games and exercises focused on “Things to do before you die” and “Things you want to be remembered for”.

Filming and editing were carried out by a community based company, and the whole team worked together to produce the final version.

Results People with learning disabilities responded magnificently to this opportunity to engage in discussions and voice their own wishes. It demonstrates the huge potential for such a resource to be used by people with learning disabilities on their own, or with others as a prompt for conversations.

Discussion The attempts by individuals and organisations to be “gatekeepers” and protect their clients from getting involved in this project highlighted the need for it.

Conclusion This film demonstrates that people with learning disabilities can be fully involved in discussions about dying, death and bereavement. We hope it will be widely to ensure that people with learning disabilities can live well to the very end of their lives.

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