The Care Quality Commission’s report on reviewing restraint, seclusion and segregation in hospital settings has been published this week and unfortunately the findings come as no surprise to me. The above quote – said recently to me in passing – by my son Austin, highlights the traumatic experiences autistic individuals go through when placed in these institutions.
The report acknowledges that there is a pattern with the experiences of many patients in these settings, notably that many have been failed by the system since childhood. Many were excluded from school, endured repeated social care placement breakdowns before eventually being sectioned and admitted to hospital. Austin’s story resonates so strongly with these findings because he was repeatedly let down by education, social care and health.
The 1983 Code of Practice that accompanies the Mental Health Act states that a mental health inpatient setting is unsuitable for those on the spectrum. It says: “Compulsory treatment in hospital settings is rarely likely to be helpful for a person with autism, who may be distressed by even minor changes in routine…” So why are so many autistic individuals subject to being detained under the act?
The answer lies in the Mental Health Act itself as autism is currently defined within the act as a ‘mental health disorder’. Autism is not a mental health illness – it is a lifelong neurological condition. This classification creates a loophole for health professionals to section an autistic individual, as long as they meet certain criteria within the act.
The report has found that professionals in hospital settings lack the experience and necessary skills to care for autistic people with complex care needs. From Austin’s experience in inpatient settings I can especially relate to this. Health professionals need to have the expertise in working with those on the spectrum. I felt that Austin had co-morbid mental health issues yet for many years they were dismissed and I was told: “It’s just his autism.” Autistic individuals are especially susceptible to having mental health conditions but they may present differently than neuro-typical individuals.
When Austin reached crisis point just weeks after his 17th birthday, he was detained under the Mental Health Act and initially admitted to an acute adolescent unit for six months before being transferred to an Assessment and Treatment Unit. Whilst I am not critical of the nursing skills of staff that cared for my son, I can agree with the report’s findings on lack of knowledge. Staff were not trained in autism and this meant that Austin did not receive suitable treatment appropriate to his needs. I found there was a lack of understanding in many of the issues autistic individuals struggle with, notably communication and sensory needs. The report finds that many individuals do not have specialist assessments to help support their complex needs. Austin’s experience echoes this as some members of the hospital multidisciplinary team had little experience of autism and failed to prepare specialist reports that would have been vital to support him.
The report concentrates on the use of segregation, seclusion and restraint. I personally feel that the lack of training and knowledge around autism is reflected in the excessive use of these practices. They should be seen as a last resort but mental health wards often use these methods as a way to contain autistic people. This can have long-lasting implications for those on the spectrum, resulting in symptoms of post-traumatic stress disorder.
The report looks at the environment of inpatient settings and concludes that they are unsuitable for autistic patients. Mental health wards are unpredictable environments which can be unsettling and confusing. This may result in an individual displaying behaviours that may challenge due to an increase in sensory stimuli. This contributes to autistic people being stuck in these institutions for unacceptably longer than necessary.
It can be incredibly difficult to them find the right community care placement. Until Autism Together came forward, my son was written off due to his complex needs and challenging behaviour. However, these institutions perpetuate this cycle and many professionals fail to realise that.
Whilst I welcome this report I feel it is debatable whether it will actually make a difference. All too often I have heard the words: “We must learn from our mistakes.” I hope I’m wrong; I hope this report will lead to change.
Let’s see if secretary of state for health and social care Matthew Hancock will deliver his assurances. Only time will tell, but I feel the Care Quality Commission, the government and NHS England have had more than enough time. We need action not empty words or gestures and we need it now. Most importantly we need to listen to the voices of those who have lived this dreadful experience.