NHS England and Improvement are working with Claire Henry and Gemma Allen, from Claire Henry Associates to improve palliative and end of life care for people with learning disabilities in England.
Death, dying, and bereavement are accepted events in the course of each of our lives and it is extremely important that we learn from these events if we are to increase our understand and to respond in ways that are meaningful for the individual.
For people with a learning disability a number of challenges exist. Firstly, they are more likely to die at a younger age than the overall population. Secondly, they often experience inadequate palliative and end of life care. For many people with learning disabilities, those who are important to them and those who care for them, these challenges can lead them into uncharted territory, at a time of profound distress, grief and often bewilderment.
As a range of evidence illustrates the needs of individuals with learning disabilities and people who care for them can very easily and unintentionally be overlooked.
As part of a national project supported by NHS England and Improvement, we are seeking views on the demand for, and gaps in resources, relating to palliative and end of life care for people with learning disabilities. The guiding aim of the project is to secure feedback about the quality of current resources and to gain an understanding of what future resources may be of value to professionals working across health and social care, in addition to people with learning disabilities and their families.
This survey is intended for health and social care professionals and providers in England but may be of interest to a wider group of people who provide care for people with a learning disability. Please take a moment to complete this survey. Link for survey: https://www.surveymonkey.co.