'We should only treat people who are ill'

Under the overarching mental health law covering England and Wales, people with a learning disability and/or autism can be detained for assessment and treatment, even though their conditions are not medically treatable. This needs to change.

The Mental Health Act defines ‘mental disorder’ to describe the cohort of people who may be subject to the application of the Act. The existing definition is clear that learning disability itself is not a mental disorder.  However, it then says “unless that disability is associated with abnormally aggressive or seriously irresponsible conduct on his part”.  That additional clause allows the Act to be applied. This means in effect that people with a learning disability and/or autism can be detained for assessment and treatment, using the same legislative framework that is applied to people with a treatable mental health condition.

"We have seen too many examples of people detained in hospital, sometimes many miles away from their families, resulting in distress for both the person and their families to precious little therapeutic benefit."

The Mental Health Act review offers an opportunity to change the law. Myself and a number of colleagues from both NHS England and NHS Improvement are arguing that the issue of detaining people with learning disabilities and/or autism who don’t have a diagnosed mental health condition ought to be included in the review.

• See also: In Our Right Mind campaign

In my former role as Clinical Lead for the Transforming Care Programme for NHS England, I and other colleagues instigated ‘Care and Treatment Reviews’ (CTRs). One of the things we were concerned about was the extent to which people with learning disabilities and/or autism, without a diagnosed mental health condition, had active treatment plans that improved their quality of life and worked towards their discharge.  The answer was…not many!

NHS England now collects data about every inpatient, their diagnosis, their section, and the outcome of their CTR. The argument that ‘treatment’ should be delivered in a hospital setting is not borne out by the evidence. NHS England has a detailed knowledge of the current care and treatment provision, and detailed evidence that many of the current inpatients subject to civil sections of the MHA – many of whom have been detained for many years – could be supported in the community without the use of the MHA.

To 'treat' or to 'intervene'?

Recently published NICE guidelines “Challenging behaviour and learning disabilities: prevention and interventions for people with learning disabilities whose behaviour challenges” describe services, interventions, and family/carer support that should be applied to support a person with learning disabilities and challenging behaviour. The guidance is based on the principle that learning disability and/or autism is not a ‘treatable’ condition but that the right interventions and services at home and in the community can support the management of behaviour, and that effective management can reduce and minimise the impact of those behaviours – both for the person and for the families and carers.

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More importantly, many self-advocacy groups, families, and professionals argue that detaining a person with learning disabilities and/or autism with no treatable mental health condition on a civil section for treatment in hospital is of limited benefit to the individual, is an ineffective and inefficient use of resources and, most importantly, is counter-intuitive.

People with learning disabilities and/or autism often respond very poorly to changes in environment, to different people, and to changes in their life routine. Often the most effective way of managing and supporting them is to adapt the environment around them such that they can lead their own life in their own home – not remove them from their home, family, and everything they are familiar with. We have seen too many examples of people detained in hospital, sometimes many miles away from their families, resulting in distress for both the person and their families to precious little therapeutic benefit.

It could be argued that if the current law was implemented properly, this wouldn’t happen.  My argument is that it does happen, because it can. Some clinicians argue that only hospital can provide the ‘safety’ required. I argue that whilst we continue to value what we perceive as ‘safety’ over a person’s quality of life then we will never properly value the lives of people with learning disabilities and/or autism. Safety is not inpatient units, physical intervention, and over-use of medication – as we often see from CTR reviews. Safety is relationships, understanding, Positive Behaviour Support, and the opportunity to have a life.   

• See also: Mental Health Today's 'Disorders Explained' information hub

It is true that a change in the law would require the system to respond differently if treatment in hospital under section were not an option, but isn’t that what ‘Transforming Care’ is all about? 

Hazel Watson is a registered Learning Disability nurse (RNLD).  Formerly the Clinical Lead for the NHS England Learning Disability Programme, she is now the Deputy Chief Nurse for the south region. These are her personal views.