More support needed for people with autism and complex needs
Publication date: 30 Oct, 2019
The Mental Welfare Commission today published its first themed visit report looking at support for people with autism.
The report focuses on one of the most vulnerable groups with this diagnosis - people with autism and learning disability or other complex care needs who were subject to mental health or incapacity legislation.
Commission visitors met 54 people living in hospital or in the community across Scotland, and spoke to medical and care staff, along with family members and carers.
The Commission carried out these visits because it is aware that autistic people have particular needs that are not always met in settings designed for people with other conditions.
For those who also have a learning disability or mental illness, they will often be treated in general learning disability or mental health wards or care services which are not designed for people with autism.
Findings include:
- A wide variation in assessment and post-diagnostic support across the country. Sometimes having another diagnosis, such as a learning disability, was seen as a barrier to proper assessment of autism.
- Of the 54 people met by the Commission, 45 were prescribed psychotropic medication on a regular basis, with 40 of those being prescribed regular antipsychotic medication.
- Thirteen of the 28 people who were living in hospital were ready to leave, but were on delayed discharge, waiting for suitable accommodation.
- For those living in the community, their environments were well designed and appropriate. In hospitals, thought had been given to how to make changes to the environment for the particular needs of the patient, but this was simply not possible in some wards.
- Families described the significant, distressing and ongoing negative effects that the diagnosis and care has had, making it difficult to maintain a family unit. Most of these family carers had not been directed to support for themselves and had not had an assessment of needs.
Colin McKay, chief executive, Mental Welfare Commission, said:
“The people we met had a range of complex, individual needs, and there was wide variation in the extent to which services were able to meet those needs.
“Getting it right takes time and can be expensive. But we found that getting it wrong, and failing to design services around the individual, could be even more expensive. Equally important, getting it wrong fails the individual and leaves professionals unable to give the high quality care and support we know they want to give.
“On the use of psychotropic medication and restraint to manage behaviours, while we cannot say that in individual cases it was unjustified, we are nevertheless very concerned by the scale of its use, and we are asking the Scottish Patient Safety Programme to work with the NHS to reduce this.
“We are also disappointed that we have again found very long delays in discharging autistic people from hospital to community settings. This has been reported several times – we now need a clear plan to solve the problem.”
Notes to editors
1. In planning the report, the Commission met with a range of organisations including the National Autistic Society, Scottish Autism, Autism Initiatives and PASDA, and attended carers’ meeting to hear from families, and consultation events on the National Autism Strategy.
2. The Commission then decided to focus on visits to people who:
- a) had a primary diagnosis of autism,
- b) had significant and complex care needs,
- c) were aged between 18 and 65, and either
-inpatients in NHS adult acute, IPCU or learning disability inpatient wards and units,
-subject to a formal civil order under the Mental Health Act or Adults with Incapacity Act, or
-in specialist services.
3. The report makes ten recommendations, which include:
- a) Ensuring comprehensive assessment, post-diagnostic support and a dedicated co-ordinator for people with autism and complex needs.
- b) Action to reduce the use of psychotropic medication and restraint.
- c) A two year initiative to ensure that people who do not need hospital care are offered community provision in 6 months.
- d) Individualised environmental assessments for people with autism admitted to hospital.
- e) Services ensuring that professionals are appropriately trained.