Each month data is published on children, young people and adults with learning disabilities and/or autism in inpatient units on the NHS Digital website. This data is published as part of the Mental Health Services Data Set and the Assuring Transformation data set.
On 6th July 2018 an evidence seminar was held on children and young people with learning disabilities whose behaviours challenge. Approaching the third year of the Transforming Care programme, the CBF and the Council for Disabled Children wanted to bring leading researchers and those who have been involved in developing evidence-based approaches together with the Transforming Care Children and Young People’s Steering Group and Operational Delivery Group and other key decision makers. NHSE supported this proposal and a seminar was held to:
- Look at what we already know from research and data
- Understand the work that is currently being undertaken in this area
- Identify gaps
- Prioritise recommendations going forward for:
- The Transforming Care Programme
- Direct work with Transforming Care Partnerships (TCPs) and SEND leads in local areas
- Future research
We are pleased to report the following outcomes as a result of the evidence seminar:
- The findings were used to inform consultation responses to the NHSE 10 year plan and have informed the final priorities for children included in the NHS Long Term Plan.
- A summary of the evidence collected on the day and within the report was presented to a conference of Transforming Care children’s accelerator sites – areas expected to make quick progress in better supporting children – on 25 September 2018. An update to this was provided by Richard Hastings and Jon Spiers on 15 March 2019.
- In November 2018 the Transforming Care children and Young people’s group discussed a proposal for a national children’s learning disability and autism research strategy. This proposal went forward to NHSE and will be discussed with a range of stakeholders shortly.
- The National Institute for Health Research (NIHR) has recently issued a research call “Community health and social care services to support people with learning disabilities and behaviour that challenges, and their families and carers”. Discussions are taking place with CB NSG members about applications in response to this call.
Thank you to all the academics and researchers who contributed to the day, to Bev Jones from SF-DDARIN for writing the full report and to Mary Busk (NHSE Family Carer Advisor), Jacqui Shurlock (The Challenging Behaviour Foundation), Amanda Allard (The Council for Disabled Children), Sue North (NHS England) and Tracy Holmes (NHS England) for organising the seminar.