In recent years it has been recognised that efforts need to be made to widen access to palliative care for those at risk of health inequality, yet disparity in provision has remained (Department of Health, 2008; Morton-Nance, S. et al, 2012; Marie Curie, 2014; Waterman, L. etal, 2016). The importance of tackling these inequities is acknowledged in the National End of Life Care Strategy (2008), The NHS Long Term Plan (2019) and is a commitment across Hertfordshire & West Essex. Improving End of Life Care for those with a Learning Disability and Autistic people is a key priority, taken from learning from the LeDeR (Learning from Lives and Deaths: People with a Learning Disability and autistic people) Programme. It is essential that all health and social care professionals treat every patient and carer with respect and dignity.
Palliative and end of life care affects all people irrespective of age, race, religion, or belief. Hertfordshire & West Essex ICB are committed to valuing people’s differences and aiming for equity in health outcomes for all. We aim to respond to individual needs, considering people’s disability, race, religion or belief, age, gender, gender identity, sexual orientation, and spirituality – and where possible these will be included in the individual’s care.
This resource pack aims to take steps to reduce the barriers faced by the patient group and support all involved in providing high quality and equitable care at the end of an individual’s life. The resource pack outlines how to achieve the following:
- Delivery of high-quality care for all people in all locations ensuring that those with learning disabilities are not disadvantaged.
- The early identification of all individuals approaching end of life.
- Initiation of discussions about preferences and wishes for end-of-life care.
- Inclusive Advance Care Planning that includes assessing needs and preferences.
- Agreement of a care plan and ensuring regular review.
- Knowledge and awareness of resources and tools available to support care delivered.
This resource pack is provided as a method to support those with learning disabilities approaching the end of their life and their carers throughout Hertfordshire & West Essex. Many thanks go to Norfolk & Waveney, on whose resource pack this is based. Thanks, is also due to all those who have helped create this resource. This has been a collaborative effort supported by multiple health and social care professionals and advocates
The resource is divided into sections designed to support easy identification of the support available depending on a person’s prognosis. End-of-life care is very individualistic, and the information set out in the chapters below may be needed at different stages, and as such is just a guideline. It is based on national guidelines for palliative care and a visual can be seen on page 15 for reference. Additions in bold, highlight additional specific support needed for those with a learning disability and/or autistic people.