News CQC reveals autistic youths held in mental health wards: Chief Executive responds to damning report It’s been branded a UK shame, and constitutes yet another autism scandal hitting the headlines, but in the wake of yesterday’s CQC report into long-term segregation of autistic children in mental health wards, North East Autism Society chief executive, John Phillipson welcomes an admission of failing systems but says ‘we can’t allow this to be another Winterbourne View or Mendip House.’ “Just weeks after horrific headlines detailing the almost unprintable abuse at Mendip House had been revealed, the dust had very clearly settled for the provider organisation, and those who held responsibility for ensuring a high standard of care. I found myself wondering what it would take for us to refuse to allow these atrocities to be normalised and those responsible to be held accountable. “When Winterbourne View occurred eight years ago I was on a Government advisory committee. So horrific was the abuse and criminality there that we all swore it could never happen again. And yet it did. And now here we are once more. Well I refuse to let yesterday’s CQC findings be yet another one of these. I welcome this information and eagerly await the further review stages but we cannot become so desensitised to autistic people being failed, abused, being locked up, held down, branded mentally ill – or allowed to become mentally ill, that this stops at another shocking headline. This is real people, real children – and we know that first hand. In the interim report published yesterday by the Care Quality Commission, entitled: ‘Segregation in mental health wards for children and young people and in wards for people with a learning disability or autism’, the shocking scale of youngsters being detained in mental health institutions became apparent. The report’s key findings showed the highest proportion of people in segregation, often in inappropriate environments for autistic people, were autistic. Because of this, when these young people were communicating their needs and distress in a way the largely untrained and inappropriately skilled staff would find challenging, it led to inappropriate treatment (including being sedated and restrained, and placed in isolation) furthering their deterioration and challenging behaviour. In the case of 26 of the 39 people studied, staff had stopped attempting to reintegrate them back onto the main ward. John knows this all too well. I can think of two cases immediately; one of a young adult languishing in hospital, ironically despite us having the resource and ability to provide the bespoke, highly-specialised accommodation and support recommended in yesterday’s report, because we were blocked by the Care Quality Commission’s complex regulation system,” he said. Since then, thanks to the Ridout Report, the CQC has vowed to make changes and issued an apology – which I applaud. But this means more is required than just the players mentioned in the report – this will require all of us, everyone around the table, to refuse to settle with the current situation. And let’s not forget this comes amid huge public sector cuts. Sentences like ‘the correct provision wasn’t available’ doesn’t tell the whole story. Why wasn’t it? Was there no correct provision, or no funding, or no staff to make the correct assessment, or no people adequately trained to offer the correct support? Autistic people are not mentally ill, they are autistic; what they need is to be understood, celebrated, loved and cared for in an environment suitable for their sensory, emotional, mental, spiritual and physical needs. We could start by adding an autism specialist onto the next stage of this review’s authorship! The evidence speaks for itself. In the second case he references, a child called Leo* was sectioned under the Mental Health Act for more than a year in a North-east hospital facility that his parents believed would be a short-term (16-week) solution. Sedated, segregated, physically restrained and highly medicated he was given limited access to his family and no community access. Leo’s general health deteriorated and so many physical restraints were deemed necessary that his mum reports his body being ‘covered in bruises’ wherever she saw him. In the 12 months since being discharged and placed in full-time specialised care with the North East Autism Society’s Cedar House in Newton Aycliffe, he has significantly reduced his medication, joined a mainstream football team, now sees his family in the community and has even visited Emirates Stadium with his key workers. I know people will say, ‘well he will say that,’ but it really is the domain of specialist providers to properly help a young man like Leo not just survive but thrive. The named social worker overseeing Leo’s case supports this position. Leo has made significant progress in all areas since starting his placement at Cedar House. It’s been excellent to see him develop positive and trusting relationships with his key workers and make significant progress in his behavioural and emotional development. Reading previous reports it’s like they are describing a very different young person. He is also engaging in education - which previously he hasn’t been able to manage. A factor, all too familiar, from the report. It states: “Typically the people we visited had been in and out of different settings such as residential schools, special education schools and different community settings from a young age. Often, moves were triggered by a breakdown of the existing placement. It was almost always the case that the last such crisis had been the immediate cause of a person being admitted to hospital.” Leo’s mum confirms this. Hospital happened out of desperation. We had a school place and at the last minute it got changed for a free placement somewhere else. By the time he was sectioned that had broken down and I couldn’t cope. I honestly thought (in there) he would get better. A year later he was a different boy. They would inject him to sedate him, up his medication and even had to have him in ‘holds’ just to walk from room to room. The North East Autism Society is the best thing to ever happen to us – but it saddens me to think it was always there but we just couldn’t access it. Health Secretary Matt Hancock responded by saying he had been deeply moved and appalled by the distressing stories of some autistic people spending years detained in mental health units. Adding that, “a small proportion of some of the most vulnerable in society are being failed by a broken system that doesn’t work for them.” But John says it will take more than being ‘moved’ to bring the systemic change needed to offer autistic people the support and acceptance urgently required. The time for platitudes has been and gone. The report yesterday listed reasons why a young person would become segregated. Damage to property was higher up the list than the dignity of the person involved. What year are we in? Once more I want to state that I welcome this review but I also want to make sure we are clear – all of us must do better for our children and young people. *The child's name has been changed to protect his identity.