Services for people with learning disability and autism – the latest from the JCHR Committee and the CQC

Last week several publications relating to the way the country currently cares for people with learning disabilities and autism.

Parliament’s Joint Committee on Human Rights published its report into the detention of young people with learning disabilities and/ or autism – see here:

The report 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”.

Findings:

• The Committee 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.

Recommendations:

• 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.

The CQC published in response explaining the various pieces of work underway to improve how they regulate mental health, learning disability and/or autism services – CQC response including:

• the current review of Restraint, seclusion and segregation which is looking how places providing inpatient and residential care for people with mental health problems, a learning disability, and/or autism use these interventions. We will also make recommendations about their use – the interim report can be found here and the full report is due by March 2020.
• The current independent reviews of the CQC’s regulation of Whorlton Hall – see here and here

The CQC has also published new information for inspectors to help them better understand how to  identify and respond to ‘closed cultures’ in services – see here

The CQC say that there are particular challenges in regulating services where there is a culture of concealment of abuse and human rights breaches. This supporting information will help their frontline staff to assess services where there may be a risk of abuse and abusive cultures. It will also help managers in CQC to support their frontline staff in this difficult task.

Purpose of the new information for inspectors:

• Helps inspectors and Mental Health Act Reviewers identify services where there may be a high inherent risk of a closed culture that might lead to abuse or breaches of human rights and lay outs how they should monitor these services
• Helps inspectors and Mental Health Act Reviewers identify warning signs that there may be a closed or punitive culture, or risk of such a culture developing and confirms that they will have a low threshold for carrying out an inspection where warning signs are developing in a service with a high inherent risk
• Sets out to inspectors and Mental Health Act reviewers how to use strengthened regulatory policy, methods and processes when there is a high inherent risk and/or warning signs. This includes gathering information from people who use services and their families early in the inspection planning, so their views can influence other evidence gathering, as well as a focus on inspection on the experience of people at the highest risk of human rights breaches.

The CQC also recently  wrote to providers of learning disability and mental health services – see here – to ask them to consider how the health and social care system can better protect people with a learning disability, autism and/ or a mental health problem.

The NCF is being represented by Pete Dillon from Making Space on the next phase of the CQC review into restraint, seclusion and segregation and we will be in touch with members shortly to provide an update on that and seek views to help shape that work.