Learning disability and autism

3.31. Action will be taken to tackle the causes of morbidity and preventable deaths in people with a learning disability and for autistic people. To help do so, we will improve uptake of the existing annual health check in primary care for people aged over 14 years with a learning disability, so that at least 75% of those eligible have a health check each year. We will also pilot the introduction of a specific health check for people with autism, and if successful, extend it more widely. Psychotropic medicine is more likely to be inappropriately prescribed to people with a learning disability or autism [93]. We will expand the Stopping over medication of people with a learning disability autism or both and Supporting Treatment and Appropriate Medication in Paediatrics (STOMP-STAMP) programmes to stop the overmedication of people with a learning disability, autism or both. And we will continue to fund the Learning Disabilities Mortality Review Programme (LeDeR), the first national programme aiming to make improvements to the lives of people with learning disabilities.

3.32. The whole NHS will improve its understanding of the needs of people with learning disabilities and autism, and work together to  improve  their  health  and wellbeing. Following a consultation on the options for delivering awareness training [94], NHS staff will receive information and training on supporting people with a learning disability and/or autism. Sustainability and Transformation Partnerships (STPs) and integrated care systems ICSs will be expected to make sure all local healthcare providers are making reasonable adjustments to support people with a learning disability or autism. Over the next five years, national learning disability improvement standards will be implemented and will apply to all services funded by the NHS. These standards will promote greater consistency, addressing themes such as rights, the workforce, specialist care and working more effectively with people and their families. By 2023/24, a ‘digital flag’ in the patient record will ensure staff know a patient has a learning disability or autism. We will work with the Department for Education and local authorities to improve their awareness of, and support for, children and young people with learning disabilities, autism or both. And we will work with partners to bring hearing, sight and dental checks to children and young people with a learning disability, autism or both in special residential schools.

3.33. Children and young people with suspected autism wait too long before being provided with a diagnostic assessment [95]. Over the next three years, autism diagnosis will be included alongside work with children and young people’s mental health services to test and implement the most effective ways to reduce waiting times for specialist services. This will be a step towards achieving timely diagnostic assessments in line with best practice guidelines. Together with local authority children’s social care and education services as well as expert charities, we will jointly develop packages to support children with autism or other neurodevelopmental disorders including attention deficit hyperactivity disorder (ADHD) and their families, throughout the diagnostic process. By 2023/24 children and young people with a learning disability, autism or both with the most complex needs will have a designated keyworker, implementing the recommendation made by Dame Christine Lenehan [96]. Initially, keyworker support will be provided to children and young people who are inpatients or at risk of being admitted to hospital. Keyworker support will also be extended to the most vulnerable children with a learning disability and/or autism, including those who face multiple vulnerabilities such as looked after and adopted children, and children and young people in transition between services.

3.34. Children, young people and adults with a learning disability, autism or both, with the most complex needs, have the same rights to live fulfilling lives. Since 2015, the number of people in inpatient care has reduced by almost a fifth [97] and around 635 [98] people who had been in hospital for over five years were supported to move to the community. However the welcome focus on doing so has also led to greater identification of individuals receiving inpatient care with a learning disability and/or autism diagnosis, so increasing the baseline against which reductions are tracked. To move more care to the community, we will support local systems to take greater control over how budgets are managed. Drawing on learning from the New Care Models in tertiary mental health services [99], local providers will be able to take control of budgets to reduce avoidable admissions, enable shorter lengths of stay and end out of area placements. Where possible, people with a learning disability, autism or both will be enabled to have a personal health budget (PHBs). By March 2023/24, inpatient provision will have reduced to less than half of 2015 levels (on a like for like basis and taking into account population growth) and, for every one million adults, there will be no more than 30 people with a learning disability and/or autism cared for in an inpatient unit. For children and young people, no more than 12 to 15 children with a learning disability, autism or both per million, will be cared for in an inpatient services.

3.35. Increased investment in intensive, crisis and forensic community support will also enable more people to receive personalised care in the community, closer to home, and reduce preventable admissions to inpatient services. Every local health system will be expected to use some of this growing community health services investment to have a seven-day specialist multidisciplinary service and crisis care. We will continue to work with partners to develop specialist community teams for children and young people, such as the Ealing Model, which has evidenced that an intensive support approach prevents children being admitted into institutional care [100], [101].

3.36. We will focus on improving the quality of inpatient care across the NHS and independent sector. By 2023/24, all care commissioned by the NHS will need to meet the Learning Disability Improvement Standards [102]. We will work with the CQC to implement recommendations on restricting the use of seclusion, long-term segregation and restraint for all patients in inpatient settings, particularly for children and young people. As well as focusing on the number of people in inpatient settings, we will closely monitor and – over the coming years – bring down the length of time people stay in inpatient care settings and support earlier transfers of care from inpatient settings. All areas of the country will implement and be monitored against a ’12-point discharge plan’ to ensure discharges are timely and effective. We will review and look to strengthen the existing Care, Education and Treatment Review (CETR) and Care and Treatment Review (CTR) policies, in partnership with people with a learning disability, autism or both, families and clinicians to assess their effectiveness in preventing and supporting discharge planning.


References

93. Public Health England (2015) Prescribing of psychotropic drugs to people with learning disabilities and/or autism by general practitioners in England. Available from: https://webarchive.nationalarchives.gov.uk/20160704161911/http://www.improvinghealthandlives.org.uk/securefiles/160704_1723//Psychotropic%20medication%20and%20people%20with%20learning%20disabilities%20or%20autism.pdf

94. Department of Health and Social Care (2018) The Government response to the Learning Disabilities Mortality Review (LeDeR) Programme Second Annual Report. Available from: https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/739560/government-response-to-leder-programme-2nd-annual-report.pdf

95. Crane, L., Chester, J., Goddard, L., Henry, L., & Hill, E. (2016) Experiences of autism diagnosis: A survey of over 1000 parents in the United Kingdom. Autism. 20 (2), 153–162. Available from:
https://doi.org/10.1177/1362361315573636

96. Lenehan, C. (2017) These are our children. Council for disabled children. Available from: https://www.ncb.org.uk/sites/default/files/field/attachment/These%20are%20Our%20CHildren_Lenehan_Review_Report.pdf

97. NHS Digital (2018) Learning Disability Services Monthly Statistics – AT: October 2018, MHSDS: August 2018.
Available from: https://digital.nhs.uk/data-and-information/publications/statistical/learning-disability-services-statistics/provisional-statistics-at-october-2018-mhsds-august-2018-final

98. NHS England (2018) Assuring Transformation dataset. https://digital.nhs.uk/data-and-information/data-collections-and-data-sets/data-collections/assuring-transformation

99. NHS England (2018) Testing New Care Models in tertiary mental health services. Available from:
https://www.england.nhs.uk/mental-health/taskforce/imp/mh-new-care-models/

100. Sholl, C., Reid, C. & Udwin, O. (2014) Preventing residential care for young people with intellectual disabilities and challenging behaviours: the development of the Ealing Intensive Therapeutic and Short Breaks Service. Association for Child and Adolescent Mental Health. Occasional Paper 32: Intellectual Disabilities and Challenging Behaviour, Chapter 2, 15-25. Available from: http://pavingtheway.works/project/wp-content/uploads/2015/11/Sholl-Reid-Udwin-preventing-residential-care-for-young-people-with-intellectual-disabilities-and-challenging-behaviours.pdf

101. Reid, C., Sholl, C. & Gore, N. (2013) Seeking to prevent residential care for young people with intellectual disabilities and challenging behaviour: examples and early outcomes from the Ealing ITSBS. Tizard Learning Disability Review. 18 (4), 171-178. Available from: https://doi.org/10.1108/TLDR-01-2013-0003

102. NHS Improvement (2018) The learning disability improvement standards for NHS trusts. Available from: https://improvement.nhs.uk/documents/2926/v1.17_Improvement_Standards_added_note.pdf