PALLIATIVE CARE FOR PEOPLE WITH INTELLECTUAL DISABILITIES: BEST PRACTICE GUIDELINES AND CORE STANDARDS (2014)

People with ID make up 2.5% of the population, with numbers rising 1% of its total every year due to improved health and social care. Life expectancy of people with ID who have reached adulthood now approaches that of the general population, with those over 50 years old being the fastest growing cohort of the ID population. Growing numbers of people with ID are developing life-limiting illnesses that require palliative care. Whilst several decades ago this group of patients lived and died in institutional care, segregated from the rest of society, in the 21st century people with ID in many European countries live in the community and rely on mainstream services for health care. Meeting the growing palliative care needs of people with ID thus presents a major challenge. There are no data available around detailing where people with ID are cared for at the end of life, and what conditions they die from. However, there is a small but growing body of research which indicates that there are a range of issues affecting end of life and palliative care for people with ID. Although most of the relevant publications are from the UK, many of these issues are likely to be applicable across Europe. The Palliative Care for People with Learning Disabilities (PCPLD) Network, which brings together practitioners in both ID and palliative care services to exchange experiences and best practice, was initially UK based but is beginning to attract wider membership from across Europe.