Lost confidence in the system
Today Parliament’s JCHR condemns the “horrific reality” of conditions and treatment under which many young people with learning disabilities and autism are detained in mental health hospitals, “inflicting terrible suffering on those detained and causing anguish to their distraught families”.
Evidence to the inquiry into the detention of young people with learning disabilities and/or autism was so “stark” and consistent that the Committee says it has “lost confidence that the system is doing what it says it is doing and the regulator's method of checking is not working. It has been left to the media, notably the BBC and Ian Birrell in the Mail on Sunday, to expose abuse. No-one thinks this is acceptable.” In relation to the Care Quality Commission, the Committee finds that “a regulator which gets it wrong is worse than no regulator at all”.
Too often families of those with learning disabilities and/or autism are considered to be the problem when they ought to be the solution. Families must be recognised as human rights defenders.
Witness testimony informed the inquiry
The report’s first chapter sets out a series of distressing witness testimony to the inquiry. As one young man with learning disabilities, Witness A, described to the inquiry: "I did not know what was happening. Looking back at it now, it does not feel real. It feels like some sort of nightmare. It was not a safe place. It was not a treatment room. I got no assessment or treatment done. There was no care. I was just put in this room, and I lay there and went to sleep."
"He had his arm broken in a restraint, the right humerus 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." - Mother Julie Newcombe whose son Jamie was detained for 19 months
“My son was kept in seclusion for up to nine hours at a time. The rule was that he could not leave until he was quiet. With his anxiety and sensory presentation, there was no way this was possible. He started to bang his head against the wall and would bite the wood in the doorframe out of desperation.”
- Anonymous parent quoted by Julie Newcombe in oral evidence
The Committee describes the “grim”, predictable pathway to inappropriate detention in these potentially “brutal” circumstances: Early family concerns raised with the GP or school lead to lengthy waits for assessment and diagnosis while the family struggles on alone, trying to cope. Then some trigger – a home move, a parent falling ill – unsettles the young person and their condition deteriorates. Professionals meet to discuss what should happen, but parents are not included. The child is taken away from their home and the familiarity and routine so essential to them, often many miles away and placed with strangers. Desperately concerned parents are treated as hostile and as a problem.
Under these conditions, the young person unsurprisingly gets worse and is then put through physical restraint and solitary confinement - which the institution calls “seclusion”. As the child gets even worse so plans to return home are shelved. The days turn into weeks, then months and in some cases even years.
The Committee states it has no confidence that the Government’s target to reduce the numbers of people with learning disabilities and/ or autism in mental health. The biggest barrier to progress is a lack of political focus and accountability to drive change. A Number 10 unit with Cabinet level leadership is required to urgently drive forward reform.
The Committee's findings
- It has “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”. The biggest barrier to progress is a lack of political focus and accountability to drive change.
- The detention of those with learning disabilities and/or autism is often inappropriate. It causes suffering and does long term damage.
- The right housing, social care and health services needed to prevent people being detained inappropriately are simply not being commissioned at local level.
- Too often families of young people, who may be desperately trying advocate on behalf of their children are considered to be the problem, when they can and should to be the solution.
The Committee sets out a series of simple practical and legislative changes that are urgently needed now:
The establishment of a Number 10 Unit, with cabinet level leadership, to urgently drive forward reform and safeguard the human rights of young people with learning disabilities and/or autism
Families of those with learning disabilities and/or autism must be recognised as human rights defenders
Changes to the law:
- The creation of legal duties on Clinical Commission Groups and local authorities to ensure the right services are available in the community.
- Narrowing of the Mental Health Act criteria to avoid inappropriate detention
Substantive reform of the Care Quality Commission's approach and processes:
- This should include unannounced inspections taking place at weekends and in the late evening,
- Where appropriate, the use of covert surveillance methods to better inform inspection judgements.
Rt Hon Harriet Harman MP QC, Chair of the Committee, said
“This inquiry has shown with stark clarity the urgent change that is needed and we’ve set out simple proposals for exactly that. They must now be driven forward, urgently.
“It has been left to the media and desperate, anguished parents to expose the brutal reality of our system of detention of people with learning disabilities or autism. We must not look away. The horrific reality is of whole lives needlessly blighted, and families in despair. What we saw does not fit our society’s image of itself as one which cares for the vulnerable and respects everyone’s human rights. It must not be allowed to continue.”
Evidence on the Care Quality Commission and in-patient units
Analysis from Professor Hatton in support of the inquiry into the detention of children and young people with learning disabilities and/or autism