A damning inquiry by the Joint Committee on Human Rights has found that young people with autism and learning disabilities are being subjected to horrific conditions in mental health hospitals up and down England.
The report found that young people with learning disabilities and autism are being placed in mental health hospitals inappropriately, often for excessively long periods of time. In numerous instances, they were also placed in solitary confinement, were physically restrained and given powerful antipsychotic drugs.
A Human Rights Violation
A 17-year-old girl called Bethany was admitted into the notorious St Andrews mental health hospital in Northampton where she was kept in solitary confinement like a prisoner, repeatedly restrained with no access to treatment or therapy and had no human contact or interaction with people of any kind.
In several cases, the treatment of these vulnerable young people was so bad that it amounted to a violation of their human rights under the European Convention of Human Rights (ECHR) to which the UK has been a signatory since 1951. The detention and confinement of young people with learning disabilities and autism threatens their right to private and family life (Article 8 of the ECHR), their right to liberty and security (Article 5 of the ECHR), and their right to freedom from inhuman and degrading treatment (Article 3 of the ECHR).
A man who has learning difficulties and was detained when he was younger told the inquiry: “They restrained me by using a hand against me. They would hold it and twist it in places it should not go. I was not allowed to go to the bathroom when I wanted, so I had to ring a bell to let them know. Sometimes they would answer it but sometimes they did not.”
A mother called Julie Newcombe, whose son Jamie was detained in a mental health hospital for 19 months, told the inquiry: “He had his arm broken in a restraint, the right humorous bone. His arm was wrenched up behind his back until the bone snapped. He was then not taken to accident and emergency for 24 hours, even though his arm was completely swollen.”
Inappropriate and Forced Detention
The first cog in the wheel that leads to young people with learning difficulties and autism lives’ being made a misery by the health system that is meant to be there to help them is when they are taken into detention when they shouldn’t be.
The inquiry found that when young people are taken into detention, it is often the result of a long and predictable series of failures by their doctors and local authorities to appropriately support them and their families.
This could start with a delay in a diagnosis of autism and even after diagnosis, many families report a constant battle with the system to access services to which they are entitled. In many cases admitting a young person to inpatient care is used as a first rather than a last resort.
Tim Nichols, the head of policy and public affairs at the National Autistic Society (NAS), told Belong that the fundamental mistake at the heart of this, “is a lack of understanding of autism and the needs to autistic people, particularly those who have reached a point of crisis and need more intensive support.”
Nichols explained that in many mental health institutions staff do not have training in what autism is or the needs of people with learning disabilities and this lack of understanding can lead to the condition of autistic people rapidly deteriorating once they are detained.
“Fundamentally at the heart of this is an issue that autism is not a mental health condition, but as a result of a lack of support, autistic people can develop more and more needs, sometimes mental health needs, and then they find themselves at a point of crisis and getting admitted to hospital because there are not the right services in the community,” said Nichols.
The inquiry concludes that detention continues even when there is a consensus from doctors, families, and commissioners that it is not the right course of action, simply because there is not the right housing, social care or services in the community.
Nichols explains that while in some cases these services have never been there, in many others they have been cut and scaled back as a direct result of the government’s policies of austerity.
According to research carried out by the All-Party Group for Autism, 71% of autistic adults said they are not in receipt of the care and support they need, while just 14% felt there were enough mental services in their area.
“We have seen services close, services that previously might have included autistic people, now because they don’t have the budget would not do that,” said Nichols, adding that this is part of a wider funding crisis in the social care system.
Once in detention then people with learning disabilities and autism are often given completely inappropriate treatment if they receive any treatment at all. Chris Rayner told the inquiry that his autistic daughter was admitted into a so-called Assessment and Treatment Unit (ATU) – the NHS jargon for a mental hospital – under the Mental Health Act where she was kept for nine months. During that period, she was given no therapy or any other kind of treatment other than anti-depressants. She was also often kept in seclusion or solitary confinement. As well as being denied her personal liberty and dignity she also missed important aspects of her education.
ATU’s are poorly equipped to deal with people with autism and learning disabilities. The charity Rightful Lives notes that “these units are not equipped to meet the individual’s care and support needs, which are not psychiatric in nature. ATUs exist because we fail to support people in the right way. ATUs are not about assessment and treatment, they are primarily about containment and imprisonment.”
Nichols explains that any hospital environment is rarely going to be appropriate for anyone with autism. In terms of the “sensory environment, they are loud, noisy, they echo, new people are coming in and out, the lights may be very bright.”
Antipsychotics and Restraint
The inquiry found time and again that patients were given antipsychotic drugs in ATUs when there was no need to do so.
Isabelle Garnett whose son was detained for 18 months in an ATU told the inquiry: “The doctors said Matthew needed to take antipsychotic medication, a medicine that is formulated for people with psychosis. But Matthew was not mentally ill. He didn’t want the medication, so he was prone restrained, face down, by 6 adults and forcibly injected with a high dose of antipsychotics every two weeks. Matthew hasn’t taken any antipsychotic medication since leaving ATU.”
In terms of giving people with autism and learning disabilities antipsychotic drugs as a way to calm them down and restrain them, Nichols is quite clear that this is against the NHS’s own guidelines as determined by the National Institute for Health and Care (NICE).
“It’s right there in the NICE guidelines, which say that antipsychotic medication must not be used to treat the core features of autism because autism is not treatable,” said Nichols.
Nichols said the evidence seen by the NAS is that using seclusion, restraint, and antipsychotics to treat people with autism and other learning disabilities is in fact increasing. He stressed that staff must have different training “to avoid using these draconian, almost Victorian measures and make sure we’ve got a kind, supportive and caring mental health system fit for the twenty-first century.”
Arbitrary Application of the Law
There is also a considerable grey area over how someone can be detained in an ATU. There are two acts that allow for an individual to be forcibly detained against their will. These are the Mental Health Act (1983) and the Mental Capacity Act (2005).
But the MCA is entirely different from the MHA. Under the MHA a person’s ‘nearest relative’ can effectively discharge them and even if a hospital overrides this decision, then the ‘nearest relative’ is still able to appeal this decision at a tribunal. However, if someone is detained under the MCA then the ‘nearest relative’ only has the right to be consulted. In effect, this means that if someone objects to their detention under the MHA, then health officials can use the MCA. This means that the MCA is often used to arbitrarily detain people with learning disabilities.
Then there is another group of people who are detained in an ATU on a ‘voluntary’ basis. In this instance, an individual gives their consent to treatment in an ATU but importantly has none of the legal safeguards afforded under the MHA or even the MCA. The inquiry heard evidence of young people threatened with being “sectioned” if they tried to leave, meaning their detention was voluntary in name only.
Nichols says that this is an area of the law the NAS is trying hard to change, as currently under both the MHA and the MCA someone can be sectioned just on the basis that they are autistic.
Families Silenced and Excluded
The inquiry also found a wealth of evidence that the families and carers of young people with autism and learning disabilities are being excluded from the decision-making process by health care professionals.
Isabelle Garnett whose son Matthew was detained for 18 months in an ATU told the inquiry: “We were marginalized and powerless to protect our son, even at the most basic level. Matthew thought he was in prison, and to us, it felt like he was being punished for being autistic and having a learning disability.”
There have even been attempts by hospitals to silence families who dare to speak out. Julie Newcombe told the inquiry what happened to her when she disagreed with the hospital’s decision.
“The hospitals like to punish parents if they speak out. They will take away Section 17 leave and restrict your visits. We were threatened with transfer to a secure hospital a long way away because we were causing trouble and we were repeatedly accused of lying,” she said.
Another parent, Jeremy, whose daughter Bethany was in St Andrews, was faced with an injunction by Walsall Council. The local authority had sought an injunction against him after he began a social media campaign to highlight the awful situation she was in. The threat of an injunction was only withdrawn after Jeremy sought legal help from the charity Mencap with the two barristers who won the case working on it for free.
Jeremy’s case was considered so serious that the Minister for Care, Caroline Dinenage MP, told the inquiry: “We are very clear that we do not support injunctions that set out to gag families who are looking to expose poor patient care.”
There are also, of course, many young people with autism and learning disabilities who do not have any family or whose family are too old or too far away to intervene on their behalf. They are truly isolated in a failing system.
Nichols said he felt that the way families are often treated was wrong as well as being completely counterproductive to a successful outcome in a patient’s care.
“Families will have almost unique levels of insight into the way their loved one communicates and what their loved one is trying to express. It’s important they are involved because it leads to better decisions being made in terms of what their care and support might look like,” he said.
There have been incidents of bullying in residential care homes for people with learning disabilities and autism, which have only been uncovered by journalists carrying out undercover investigations. Earlier this year, BBC Panorama uncovered horrific abuse at Whorlton Hall in County Durham and in 2011 exposed a similar pattern of abusive behaviour towards patients at Winterbourne View in Bristol.
In the case of Winterbourne View a whistle-blower had already approached senior management and the Care Quality Commission (CQC), the official regulator, but without any success, as no action was taken, and the abuse continued. He was eventually forced to go to the BBC, as he had no other options left.
At Winterbourne View the abuse consisted of serious bullying, where vulnerable patients were given cold showers, locked outside and beaten up for no reason. Eventually, after the BBC Panorama programme aired, the staff involved were dismissed, but it is not clear if any further action was taken against them.
This inquiry sheds a welcome light on a section of health care that more often than not gets overlooked. There is significant evidence that a culture persists in mental health of tolerance of abuse, where secrecy is the norm and families are frozen out of important medical decisions.
However, the increased media attention on the issue is perhaps beginning to produce results. Rebecca Hilsenrath, Chief Executive of the Equality of Human Rights Commission said in a statement: “Children and young people with learning difficulties and autism deserve the dignity and respect as anyone else. They must not be locked up and isolated from their families for long periods of time. We welcome the call to strengthen legal protections and we are also calling for the right to independent living to be enshrined into domestic law.”
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