A catastrophic physical and mental deterioration when their son was detained in an Assessment and Treatment Unit left the parents of Matthew Garnett fighting to win his life back. Isabelle Garnett describes how eventually they won the battle, how it could have been avoided in the first place, and how happy Matthew is today.
Imagine yourself face down, restrained and being injected against your will with a substance that terrifies you. Imagine feeling trapped in your body, gradually falling from terror, into lethargy and confusion. How would you feel? How would you behave?
Now imagine being a 15-year-old boy with autism, mild learning difficulties, severe generalised anxiety, OCD, ADHD and receptive language difficulties, being held down by up to six adults. Imagine this happening to you at least every two weeks, without any prospect of an end or even understanding why.
I’m Isabelle, Matthew’s mum. Matthew is the 15-year-old boy whose life was as I have just described while he was detained in St Andrews Hospital in Northampton. Matthew’s sectioning and admission to an Assessment and Treatment Unit (ATU) could have been predicted and prevented. The catastrophic physical and mental deterioration he endured could have been avoided. The enormous financial cost to the NHS and to the tax payer could have been saved. The fact that Matthew’s sectioning could have been prevented isn’t only our opinion, it was a finding from the case review commissioned by former Care Minister Alistair Burt. The review also concluded that Matthew’s was not an isolated case.
At the age of 14, the challenges Matthew faced because of his neurodisabiliy became more pronounced. He began ‘freezing’: holding rigid positions for several minutes, unable to ‘snap out of it’. Although Matthew always had echolalia (repeated speech) the nature of his self-talk appeared to change, his behaviour became increasingly challenging to himself and to others. The independent psychologist working with him in his residential school raised the possibility that he might be experiencing psychotic episodes and recommended a full psychiatric assessment. The psychiatrist in turn recommended an inpatient assessment. Nothing was available locally and we were told that the best place would be St Andrew’s Hospital.
However, he was not referred immediately – months ticked by without anything happening. Matthew’s behaviour deteriorated further and the psychiatrist said, “If things get too bad call 999”. We resisted for as long as we could until we reached crisis point and had no choice. We made the call and he was taken to Accident and Emergency where he was sectioned under the Mental Health Act. The psychiatrist told us this section would last 12 weeks, during which time Matthew would receive autism-specific assessment, treatment and care. Instead, Matthew endured the most traumatic years of his young life. From the age 14 to 16 he lived ‘under lock and key’ with catastrophic and devastating consequences. We will regret this decision for the rest of our lives.
We have learnt a great deal over the last two years. ATUs are the worst possible environment for people with autism and/or learning disabilities, for many reasons. The sensory overload alone makes a hospital environment unbearably painful. Being ripped away from all that you know and all who love you is devastating for any child, but so much more so for someone with autism and learning disabilities who is terrified of any change in routine. For the estimated 70% of people with autism who suffer from anxiety, being contained can only exacerbate anxiety and fear. Worse still, the rise in anxiety leads to a downward spiral of negative behaviour and a vicious cycle of over-medication.
Beyond the damage caused by an inappropriate environment, Matthew also suffered because of the lack understanding about autism or learning disabilities, from both the medical professionals to the unqualified staff on the ward. For example, the medical professionals continually misinterpreted Matthew’s behaviours, calling him ‘callous’ and stating that he had a ‘conduct disorder’. We were told his ‘freezing’ was not ‘autistic catatonia’ as had been previously suspected, but was ‘demand-avoidance’.
These misunderstandings seemed to justify containment, seclusion, routine prone-restraint and forcible injections with antipsychotic medication, medication that we now know he didn’t need, didn’t help him get better and could lead to complications for his health. The hospital attempted only to manage the resulting behaviours rather than understand and treat their cause. The lack of purpose behind this approach was captured in the fact that no discharge plan had ever been drafted. Matthew seemed to be locked into a one-size-fits-all reactive approach that made no reasonable adjustments for his neurodisability.
However horrendous this two-year experience has been, Matthew is one of the ‘lucky’ ones: we fought tooth and nail to get him out. The fight concluded in the Channel 4 Dispatches television documentary on Channel 4, Under Lock and Key.
But rather than focus on what doesn’t work, I’m happy to tell you there is a better way …
Within 24 hours of leaving the ATU, Matthew was out in the community. He is no longer contained, no longer restrained, no longer secluded and no longer forcibly injected with anti-psychotic medication. He is safe, happy, healthy and learning. His personal profile of strengths and difficulties are now understood. Autism-trained staff work positively and proactively to support Matthew to manage challenges he faces. They use communication friendly strategies (such as visual support and allowing extra processing time) to give him the best chance of success. His care staff have taken the time to find out and care about what makes Matthew tick. For example, a few weeks after Matthew had left the ATU the staff from his new home took him to the beach because they knew he loved the sea. He has a highly structured and predictable day that reduces his latent anxiety. His days are packed with meaningful activities, such as walking the therapy dogs, buying his own clothes, organising his house ’Film Night’, playing football and looking after horses. He has just started a voluntary job at the local football league club and has enrolled for the Duke of Edinburgh scheme. After a busy day, the low-arousal environment of his home is reassuringly personalised but also calming to his senses.
Matthew’s medical treatment is overseen, as an outpatient, by a specialist psychiatric team. His complex profile of co-morbidities have been diagnosed and the underlying cause treated. Matthew is no longer prescribed any anti-psychotic medication at all – only anti-anxiety oral medication. This level of care of course does not come cheap. However, it is cheaper than the eye-wateringly expensive ATU, and a far more effective use of funds, with real outcomes. Such costs could potentially have been avoided entirely if Matthew had not reached a crisis point in the first place.
Thanks to Matthew’s campaign gaining a great deal of public and media support, Social Care Minister Alistair Burt commissioned a case review into what had led to his crisis and consequent sectioning. All the professionals involved acknowledged that Matthew’s was not an isolated case. It concluded that ‘a crisis could have been predicted and potentially prevented.’ The report identified ‘missed opportunities’ that pointed to a complete failure in joint working and communication between Education, Social Care and Health Services. It identified ’lessons to be learnt’ within each service, urging that every professional and organisation involved in Matthew’s care should reflect on their role.
’Early intervention’ has long been an education buzz-word. Sadly, Alistair Burt’s Case Review identified – as for so many other children with autism – that Matthew’s journey throughout the education system was riddled with obstacles. The case review spoke of the SEN department’s and mainstream school’s ‘adversarial approach’, and that’s exactly how it felt to us as parents, as we won a series of tribunal battles to get Matthew assessed and have a statement issued, and battled to find a mainstream school prepared to take him. By the time Matthew was eight, no mainstream school could meet his needs. A lack of in-borough specialist autism provision meant that Matthew ended up in an out of borough residential placement.
According to the case review mainstream school professionals and Lambeth SEN Department should have accepted health professionals’ assessments and read the documentation. They were criticised for not acknowledging, understanding and providing for Matthew’s needs. Our experience of the education system was of placement breakdowns, multiple exclusions, long delays and incredibly slow responses. The LEA agreed Matthew needed a specialist setting, but was unable to offer a suitable placement. Poor communication between education, health and social care meant that Matthew was not known to local services and did not receive a Care and Treatment Review until six months after he was sectioned.
Social Care did not acknowledge our requests for help until it was too late, despite a diagnosis that Matthew was ‘severely affected’ by his autism, with all the functional implications this carried. Matthew was not even registered with the Children with Disabilities Team until he reached crisis point. It is hard to know why this was. One professional suggested that we were turned away because of misconceptions that verbal children cannot be severely affected by their autism. Another suggested a perception that middle class parents could afford to pay for their own respite – if true, an unacceptable and inaccurate value judgement. Social services failed in their duty to assess the individual needs of the child and to provide adequately for those needs.
Matthew is one of the (relatively) lucky ones – he had parents who could fight his corner. There are many who don’t. Please do not lose sight of them. As Christine Lenehan (1) made clear, these are your children too, we all need to keep up the fight to enable all young people to have their needs properly met early on and not to wait for a crisis to happen and all the trauma that goes with it.
- Christine Lenehan, (2017) These are our Children, DoH