JCHR report on the detention of young people with learning disabilities and autism

Background

During its 2018 inquiry into the restraint and seclusion of young people in mental health hospitals, the Joint Committee heard evidence on the inappropriate and long term detention of young people with learning disabilities and autism. This included Bethany, detained in St. Andrews under section for nearly two years; much of that time being spent in seclusion. The Committee decided to launch this inquiry, during which the BBC's Panorama investigation into Whorlton Hall aired, exposing, again, the intentional and systemic abuse of patients detained in hospital.

Firstly, the report sets out the damage caused by the current system: we are inflicting terrible suffering on those detained in mental health hospitals and causing anguish to their distraught families. It's a catalogue of dire consequences: bones broken during restraint; years of seclusion; overmedication as easy behavioural management; absences of appropriate treatment; family members vilified; patients missing basics like food or access to the bathroom; and the long-term physical and psychological consequences these things cause.

It also tracks the failings that lead to detention; a crucial aspect largely missing from the Independent Review of the Mental Health Act. As put by Caroline Dinenage MP: young people end up in an in-patient setting as a result of a number of failed opportunities to intervene earlier, provide the right support and maybe diagnose them from an early stage. And this from a mother of a detained young person: '…preventative help is largely a myth.'

But we have known this for some time. The report notes 'the list of reviews, reports and policy initiatives' designed to tackle this problem, and their limited progress. It shows the net reduction of just 125 people detained in institutions over the lifetime of Transforming Care, and the doubling of detained children since 2015. It concludes '…we have no confidence that the target to reduce the numbers of people with learning disabilities and/or autism in mental health hospitals, set out in the NHS Long Term plan, will be met.'

Recommendations

Recommendations include:

• The establishment of a Number 10 unit to urgently drive forward reform to minimise the number of those with learning disabilities and/or autism who are detained and to safeguard their human rights;
• A legal duty on Local Authorities and Clinical Commissioning Groups to ensure the availability of sufficient community-based services;
• Stronger legal entitlements to support for individuals;
• Putting Care and Treatment Reviews and Care, Education and Treatment Reviews on a statutory footing;
• Narrowing the criteria for detention under the Mental Health Act to avoid inappropriate detention, including that the required treatment is not available in the community;
• Fully involving family members in all relevant discussions and decisions;
• Young people must not be placed long distances from home and financial support must be made available to ensure that families are able to visit their loved ones;
• Substantive reform of the Care Quality Commission's approach and processes, including unannounced inspections taking place at weekends and in the late evening, and the use, where appropriate, of covert surveillance methods to better inform inspection judgements.

Our thoughts

While the inquiry was limited to the detention of young people with learning disabilities and/or autism (though a number of the recommendations apply to adults as well), many of the issues highlighted apply to everyone subject to detention under the MHA. Readers may remember the case of X, a 17 year old girl with mental health problems facing discharge with no support and frightening prospects. Sir James Mumby, president of the Family Division warned: 'If we, the system, society, the State, are unable to provide X with the supportive and safe placement she so desperately needs, and if, in consequence, she is enabled to make another attempt on her life, then I can only say, with bleak emphasis: we will have blood on our hands.'

Listening to individuals with experience of detention for our submission to the MHA review, we heard of predictable and avoidable routes to detention again and again:

"You need earlier interventions. You have to get to the point when you snap, or they see you snap, and then they have to make a major decision whether to section you."

We told the review that the best way to reduce detentions is to increase the quality and availability of community services. Our helplines receive thousands of calls from people unable to access appropriate support. People expect there to be legal rights to NHS services, but there really aren't any concrete entitlements. Effecting the report's recommendation for a legal duty on local authorities and Clinical Commissioning Groups to provide sufficient community services would be an inroad to this, though it doesn't seem to go as far as individually enforceable rights to a service.

The bigger change is harder to envisage. It requires reciprocal rights and genuine cooperation. Unfortunately detention, and its institutions, justifies its own existence. As put by the Centre for Welfare Reform:

"The gravest danger for people who end up inside these institutions is that people start to believe they must be there for a good reason… and that it is the complex needs of the person that require these extraordinary measures, with such an extraordinary cost. However, just because an institution exists - and just because people are sent there - does not mean the institution is necessary."

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