This guide is the outcome of a two-year project in North Staffordshire (funded by the Big Lottery) in which Mencap and Keele University worked collaboratively to support individuals with a learning disability, their family and carers through their journey to the end of their life. The guide was written based on the authors’ experiences throughout the project, and the contents dictated by the outcomes of focus groups and numerous dialogues with a range of parents, carers and health and social care professionals. Case illustrations are used throughout to ensure that the guide remains grounded in practice so that theory can relate to practice in a meaningful way. Once written, the draft guide was circulated to parents, carers, nurses, representatives of voluntary organisations, and various professionals in learning disability and end-of-life care services, across the UK for feedback. Much of this feedback was integrated within the final document.
Living and dying with dignity – The best practice guide to end-of-life care for people with a learning disability