Autonomy & advocacy in planning for a medical emergency: Adults with a learning disability and family carers’ experiences and perceptions of the Recommended Summary Plan for Emergency Care and Treatment (ReSPECT) process

Background: The Recommended Summary Plan for Emergency Care and Treatment (ReSPECT) is designed to facilitate meaningful discussions between healthcare professionals, patients, and their family about preferences for treatment in future medical emergencies. People with a learning disability may face particular barriers in completing health care plans and receiving emergency treatment, however little is known about their preferences towards emergency care treatment planning. This study explores the views of people with a learning disability, and family carers about ReSPECT. Methods: A reference group of 5 people with a learning disability contributed to the design of the workshops and evaluation of outputs. Online, arts-based interactive workshops were held with 2 groups of 6 people with a learning disability to explore how they felt about emergency care treatment planning, and to co-produce materials to support ReSPECT conversations. Carers of people with a learning disability participated in focus groups or interviews. Data from workshops, focus groups and interviews were analysed thematically. Results: Themes were; Getting the Process Right, Lack of trust a barrier to ReSPECT planning, and Person-Centred Care. All groups supported the ReSPECT process feeling that ReSPECT plans could support person-centred care, enhancing the autonomy of a person with a learning disability and supporting the advocacy of carers. However, drawing on their previous experiences of the health care system some expressed doubt that their wishes would be carried out. Suggestions were made for improving the ReSPECT process and used to develop resources to support ReSPECT planning. Conclusions: Emergency care planning and ReSPECT are viewed positively by people with a learning disability and family carers. To ensure this works well for people with a learning disability attention should be given to reasonable, personalised adjustments to support their participation in planning conversations. There is a wider challenge of fostering trust in the health care system.