15 Developing an improvement toolkit for care for people with a learning disability in a hospice setting

Introduction Recognising the variation in care and poorer outcomes sometimes experienced by people with learning disabilities or autism in acute hospitals, NHS Improvement produced audit standards¹ and an improvement toolkit.² The core standards are: Respecting and protecting rights Inclusion and engagement Workforce Palliative care patients and their family members may have a learning disability or autism. It is essential that hospices identify and address any variations in the care they provide for people with learning disability or autism in order to improve experience, optimise quality of life and prevent premature death. It is not known whether the improvement toolkit developed for hospital settings could be useful for hospices. We describe the iterative process of testing and adapting the NHSE Learning Disability improvement toolkit for use in a hospice setting. Methods The Learning disability audit team reviewed the NHSE toolkit and developed a workshop programme for hospice staff and managers. The audit team regularly reviewed the themes emerging from the workshops. Results Over 2 months, 5 workshops took place involving 36 staff representing all departments and including people with personal experience of learning disability or autism. To optimise staff engagement, the team developed workshops that could be included in existing team meetings and used interactive techniques to capture a wide range of perspectives. 4 people who attended the workshops agreed to become learning disability link practitioners for their team. Workshop themes included the need for staff training and confidence; increasing flexibility in service delivery and patient correspondence; and the need to build links and learn from specialist groups and experts by experience. Conclusions We identified key themes for improvement around staff development; organisational processes; and links with external groups. The Learning Disability Improvement Standards remain relevant to hospice settings, however further research is needed to identify optimise implementation of the toolkit. References The learning disability improvement standards for NHS trusts. June 2018 NHS Improvement. Reducing deaths of people with a learning disability in NHS acute (hospital) trusts in England: an improvement tool. Nov 2019. NHS England and NHS Improvement.