People with Learning Difficulties and Autism: Detention in Secure Settings

Baroness Hollins Excerpts

Thursday 28th October 2021 Grand Committee

Asked by

[Baroness Hollins]

To ask Her Majesty’s Government what plans they have to prevent people with either (1) learning difficulties, or (2) autism, from being detained in secure settings when an assessment has recommended they should live in the community.

[Baroness Hollins (CB)]

My Lords, more than 2,000 autistic people and people with learning disabilities are currently detained in hospital, mostly inappropriately. Two years ago, the then Secretary of State asked me to review the care of 77 people who were at that time detained in long-term segregation. The number is now 100. My ICETR oversight panel includes people who have experienced long-term segregation themselves, family members, and experts in mental health, housing and social care. Those 77 people have all now had independently chaired education, care and treatment reviews.

We examined the first 26 of the 77 reviews in depth. What we found was profoundly shocking, and we identified several areas for urgent improvement, published in a thematic review. Typically, they had past histories of poorly commissioned education, therapy and care. There was little clinical continuity between hospital and community services, no clear therapeutic purpose for admission, and inadequate clinical assessments, with little recognition of previous trauma or its implications for mental health and behaviour. The oversight panel and NHS England have worked with the Royal College of Psychiatrists to develop a new clinical contract to try to ensure active management and therapeutic benefit.

More than half of those we reviewed were autistic people, both adults and children, but the hospitals where they lived, and those responsible for helping them move back home, lacked much understanding of the autism-friendly environment or care needed by autistic people. Most of the people reviewed were ready either to be discharged or to start a transition process back to their community.

Repeated past commissioning failures were compounded by poor commissioning responses to the ICETRs. Apathy and bureaucratic delays were part of the problem—professionals not turning up to meetings, agreed action not taken, wrangles over who pays for what. We saw interminably slow processes keeping people in situations that were at best inappropriate and all too often violated human rights. One woman had reportedly been ready for discharge for 19 years. I ask the Minister: how will Her Majesty’s Government ensure that ICETRs are being taken seriously by commissioners and that commissioners will be held accountable?

As part of our review, we gathered and published good stories of people who had managed to live happily in their communities after being discharged. We called the document Helping People Thrive, and it was written to inspire commissioners and clinicians. Mr W was one of those good stories. Prior to his discharge, he had been detained in hospital for more than 20 years, spending most of his time in what amounts to solitary confinement. Mr W has now lived in his own home for nearly three years, near his family. His home environment and care have been built around his needs. It costs no more to support him in this way than it did to detain him in hospital. Most importantly, despite still recovering from the trauma of being in the wrong environment for so many years, he is now happy.

We are pleased that our recommendations, both for senior intervention—a form of intensive case management to assist in overseeing discharge arrangements—and for the continuation of independently chaired reviews, have been supported by Her Majesty’s Government.

Some people we reviewed had social workers, advocates and families who were trying hard to move them back home, but a lack of local housing and care providers with the expertise needed was hindering their plans. A key part to successfully supporting someone in the community is the provision of good-quality housing. Sometimes commissioners are persuaded that moving the person to a single-person residence in or near the hospital is the solution, but such interim moves make it less likely that the person will ever move properly back to their own home community, and they incur continuing high fees for commissioners. How will Her Majesty’s Government ensure that there is enough housing, without months or years of delay? We must do everything we can to give people the choice to live where they want and with whom they want, just as we all do.

Sometimes, people tell us what they are unable to put into words through their behaviour. Recognising what they are trying to communicate and helping them to find a way to understand their feelings is often what enables people to move on from patterns of destructive or difficult behaviour. Good relationships with care staff are key, as shown in Dr Rebecca Fish’s recent research.

Speaking as a mother and former practising psychiatrist in this field, I believe that more attention needs to be given to really listening to people and enabling them to communicate what is troubling them, using whatever method works for them. Books Beyond Words—I declare an interest, as it is the charity I founded—creates word-free health and social stories to help people communicate their hopes and fears through the universal language of visual communication. Respond, the only specialist charity in the country offering trauma psychotherapy for autistic people and those with learning difficulties, is overwhelmed by referrals. Medication continues to be the main response to challenging behaviour. When will Her Majesty’s Government invest in widely available psychotherapy and specialist trauma therapy for people with learning disabilities and for autistic people?

Current community mental health and learning disability teams are rarely well equipped and resourced to provide the support needed for traumatised people. This deficit contributes to people’s care arrangements breaking down and to hospital admissions. If we invested in good local care, we could properly support people being discharged from hospital and prevent a new generation being admitted because of a lack of the right community support.

The social care system is nothing without the workforce. The pandemic has shone a light on the extraordinary dedication and determination of those who work in care. It is now time to address the many issues that have faced the workforce for several years, but which the pandemic has strained to breaking point. We do not currently have enough staff with the right training to ensure that people’s needs are met—staff who can empower and support that person to life their live to the fullest, who respect and value them, and can create good relationships with them.

Back in 2016, I chaired a report for Health Education England called Care Roles to Deliver the Transforming Care Programme, but little action to introduce effective training, supervision and meaningful career pathways seems to have happened. I recently visited care settings in Germany and was impressed by parity in length of training, pay, and terms and conditions for care staff, nurses, primary school teachers, occupational therapists and others. There were no staff shortages and services were much more joined-up.

How will Her Majesty’s Government ensure that care providers with expertise to support people like Mr W are available all over the country? Will they consider changing the rules, so that care workers can enter under the skilled worker immigration scheme? I hope the Minister will reassure me and the Committee that the expected reforms to the social care workforce and the promised cross-departmental strategy will tackle training as a priority. Could the noble Lord confirm whether recent recommendations from my oversight panel, and from all the other recent high-profile reports, are being taken forward in the Government’s new strategy?

Finally, I ask the noble Lord whether Her Majesty’s Government will consider making it a statutory requirement to report restrictive practices, including long-term segregation, and to publish details of commissioning organisations that still have patients in long-term segregation. Noble Lords may be surprised to know that many commissioning organisations that I have asked do not know if they have people in long- term segregation.

They could do this, for example, by making an annual report to Parliament about the numbers of autistic people and people with learning difficulties being detained in hospital, including those in long-term segregation, naming the responsible authorities, and reporting about the action being taken to develop effective care and support in the community, so that crisis admissions to hospital due to local service failures no longer happen.

We have debated this issue many times and read so many shocking reports. It is time to end scandals and tragic deaths and to give people back their lives. The new strategy needs political support. It needs resources to untangle the bureaucratic web and to reverse the perverse financial incentives that seemingly trap people in hospital. I am grateful to noble Lords for speaking in this debate and for helpful briefings from Mencap, Rightfullives, the Challenging Behaviour Foundation, the National Autistic Society and the Royal College of Psychiatrists. I look forward to hearing everybody’s contributions and the Minister’s response.