Children with learning disabilities or autism
getting far FAR less than
Children with learning disabilities or autism getting far FAR less than they deserve: Sally Morgan on the recent worrying report by the Children’s Commissioner for England
As someone who has spent much of their career trying to keep young people with additional needs as far away from mental health hospitals as possible, I very much welcome the publication of the Children’s Commissioner for England, Anne Longfield’s, recent report ‘Far Less Than They Deserve: Children with learning disabilities or autism living in mental health hospitals’ (2019). I particularly appreciate the clear message that children end up stuck in mental health services due to lack of adequate community support and provision.
The report can be a hard read, in particular the accounts of poor practice such as the over-use of restraints, and the descriptions of systematic neglect and abuse. Children may spend months and sometimes years in hospital and may be placed many miles away from their families and communities. This is particularly troubling as there may not be access to appropriate education and activities in hospital. It was disturbing to read that Care, Education and Treatment Reviews (CETRs), an important safeguard, were not always completed diligently, or at all. It was worrying to hear it suggested that medication was being inappropriately used as a ‘chemical cosh’, particularly in light of the recent campaigns such as ‘Stopping over medication of people with a learning disability, autism or both with psychotropic medicines’ (STOMP). Seclusion was another disturbing practice which is being used when it does not seem to give any therapeutic benefit. There was a common theme that the informing legislation and guidance did not always work to protect children, and the report asked whether sectioning is an appropriate response to difficulties and highlighted that parents often feel powerless to question care providers. Sadly, ‘perverse incentives’ for funding hospital places contributed to a lack of inter-agency working to facilitate timely discharge, so that children could spend weeks or months in limbo, waiting for support in their communities.
There were descriptions of good areas of practice, for example a hospital reducing the use of restraint by employing creative proactive strategies, such as a sensory room. It was interesting to read about those community services that were doing well in keeping children out of hospital and helping them leave hospital with appropriate support. I know the Ealing model and the two services there, which are described in the report. They are both cost- and clinically effective multi-agency services. It is worrying though that only two other services were identified as examples of good practice, both based in Norfolk, so it seems as if these services only exist in a couple of areas of England. There is a clear description of what is needed in community services, and this could form the basis of an audit tool.
Whilst I agree that children’s communication may be a factor in their needs not being met, and it is helpful to highlight that challenging behaviour is a form of communication, it would have been better to put the onus on services to properly train staff, rather than implying that this failure comes about through a fault in the child. However this report did highlight the difficulties in recruiting and retaining appropriately trained staff, and in particular reported the decline in numbers of learning disability nurses. This report did not question why recruitment was so problematic and further detail would be welcome here. It was helpful to let readers know that the environments were often ‘harsh and noisy’; but it would have been useful to point out that this puts a disproportionate burden on children with sensory issues, common in autism and learning disabilities.
Clinical psychologists working in children’s services will find much food for thought in this report and it is a ‘call to action’ for anyone who cares about outcomes for these children. As a profession we have much to contribute to improving services, for example providing clinical skills such as Positive Behaviour Support (PBS), demonstrating clinical leadership and advocating for service improvement and legislative change. I look forward to working with my colleagues in health, social care and education to acting on the findings of this report, as I personally find it shameful that we are treating these children so poorly.
Sally Morgan is a Consultant Clinical Psychologist and an ACP-UK member. She has recently been elected to the Board of Directors and will take up her new role at the end of June, after a meeting to allocate directorial roles.