Palliative Medicine:Scoping the level and extent of service provision to people with intellectual disability at end of life Poster Presentation

Background: Concerns exist about the end of life care<br/>that people with intellectual disabilities receive. This population<br/>are seldom referred to palliative care services and<br/>inadequate data sets exist about their place of death.<br/>Aim: To scope the extent of service provision to people<br/>with intellectual disabilities at the end of life by specialist<br/>palliative care and intellectual disability services in one<br/>region of the United Kingdom.<br/>Methods: As part of a larger doctoral study a regional survey<br/>took place of a total sample (n=66) of specialist palliative<br/>care and intellectual disability services using a postal<br/>questionnaire containing forty items. The questionnaire<br/>was informed by the literature and consultation with an<br/>expert reference group. Data were analysed using SPSS to<br/>obtain descriptive statistics.<br/>Results: A total response rate from services of 71.2%<br/>(n=47) was generated. Findings showed a range of experience<br/>among services in providing end of life care to people<br/>with intellectual disabilities in the previous five years, but<br/>general hospitals were reported the most common place of<br/>death. A lack of accessible information on end of life care<br/>for people with learning disabilities was apparent. A few<br/>services (n=14) had a policy to support this population to<br/>make decisions about their care or had used adapted Breaking<br/>Bad News guidelines (n=5) to meet their additional<br/>needs. Both services recognised the value of partnership<br/>working in assessing and meeting the holistic needs of<br/>people with intellectual disabilities at end of life.<br/>Conclusions: A range of experience in caring for people<br/>with intellectual disabilities was present across services,<br/>but more emphasis is required on adapting communication<br/>for this population to facilitate them to participate in their<br/>care. These findings could have international significance<br/>given that studies in other countries have highlighted a<br/>need to widen access to palliative care for this group of<br/>people.