Experiencing a mental health crisis can be particularly distressing for people with a learning disability or autistic people. In some instances, neurodiversity may mean that people’s reactions are not recognised by others as them communicating a need, emotion or distress, but seen as ‘behaviours to be managed’.
Getting the right support in the right place and at the right time goes a long way to helping people avoid a crisis. For those experiencing crisis, it’s important that they’re supported by teams who work together well and have enough staff with the right skills to give individual support.
Addressing challenges
Unfortunately, we know that too many autistic people and people with a learning disability are still held in long-term segregation, or experience other restrictive methods, in mental health hospitals. This can be because community-based options didn’t prevent escalation to crisis point and admission to hospital – as well as there being too few community options for people to move into after hospital treatment.
Our Out of Sight report identified areas of progress to be made to reduce the use of restrictive practice for people with mental ill health, people with a learning disability and autistic people. They should receive high-quality, person-centred care and be supported to live in their communities. If hospital care is required, this should be given by the right staff, who are trained to support people’s needs. In addition, from the point of admission, the aim should be for people to become well enough to leave hospital.
Following that publication, the then Secretary of State announced that all autistic people and people with a learning disability in long-term segregation would have their care independently reviewed. Independent Care (Education) and Treatment Reviews (IC[E]TRs) were introduced and the subsequent report, My heart breaks – solitary confinement in hospital has no therapeutic benefit for people with a learning disability and autistic people, and recommendations were published last year.
The report recommended that the CQC should lead on IC(E)TRs for the next two years. We’re working with colleagues in NHS England to finalise our methodology, approach and quality assurance processes. We’re also committed to enabling people to move out of long-term segregation, but that relies on there being the right models of care in the community. Whether that be through preventative support, or to facilitate people leaving hospital as soon as they can.
Acting on experiences
Using our new powers through systems assessments, we intend to encourage models of care to offer the right support at the right time. We need to work together across sectors and encourage providers to work collaboratively with local authorities and commissioners to ensure that the right services are available now and in the future. Along with colleagues, I see this as extremely important work. It complements other elements of work we’re doing around equity of access to care for autistic people and people with a learning disability.
Last year, we convened an expert advisory group to identify where we can have most impact in reducing inequalities for people with a learning disability and autistic people. I wrote about our ambitions in my last CMM column. At least half of the group’s members have lived experience or are from organisations representing people with lived experience.
Our most recent meeting was to explore how to make it easier for people and their carers to access GP services and an annual health check. We know that for some people, a lack of reasonable adjustments means that getting registered or making a GP appointment isn’t possible. If those routes are closed or difficult to access for people and their carers, large numbers of people miss out – both on treatment and care when they are ill, but also on preventative and proactive care through regular or annual health checks.
When we see person-centred care in our inspections of services, we’re keen to share it so others can be inspired. Last autumn, we rated Grasmere Avenue, a care home for up to six autistic people and people with a learning disability in Hounslow, as ‘Outstanding’.
Leaders encouraged a culture in which people’s rights, needs and wishes were at the heart of everything the staff did. People living there who previously had experienced self-harm or low moods were happier and more at ease, and leaders supported a culture that was open and honest. I hope that by sharing this good practice we can promote improvements across sectors to support people to lead their best lives.
What is your experience of working with local authorities and commissioners to support people with a learning disability and autistic people? Leave a comment on this article or join the conversation to share your thoughts.
Rebecca Bauers is the Director for People with a Learning Disability and Autistic People at the Care Quality Commission (CQC).
Email: [email protected]
X: @CQCProf