Learning Disabilities and Autism: Solitary Confinement in Hospital

Baroness Hollins Excerpts

Thursday 23rd November 2023 Lords Chamber

Asked by

[Baroness Hollins]

To ask His Majesty’s Government whether they plan to expedite implementing the recommendations in the report My heart breaks—solitary confinement in hospital has no therapeutic benefit for people with a learning disability and autistic people, published by the Department of Health and Social Care on 8 November.

[Baroness Hollins (CB)]

My Lords, I declare an interest as I have autistic family members and my son also has a learning disability. I am grateful to all noble Lords who have signed up to speak in this topical debate: all ideas on how to make progress are needed. I thank the Minister for agreeing to meet interested Members of your Lordships’ House after the debate. My gratitude is also due to the panel of experts by experience and professionals who contributed to the report we are discussing today. The report is called My Heart Breaks—Solitary Confinement in Hospital Has No Therapeutic Benefit for People With a Learning Disability and Autistic People.

It is four years since the Secretary of State asked me to review the effectiveness of a new Department of Health-run programme of independently chaired reviews called ICETRs. The aim was to speed up discharges of people detained under mental health legislation in long-term segregation, following a CQC report that highlighted serious concerns about its use. We designed the review process to include each person’s life story, the reason for their admission to hospital and to long-term segregation, any mental health diagnosis and the treatment plan.

People with learning disabilities and autistic people have a higher incidence of adverse childhood experiences, yet none of this information was routinely provided to admitting clinicians. Two phases of reviews took place, 191 in total, with 115 people found to be in long-term segregation at any one time. ICETRs ended in March this year. They were a good diagnostic tool but, disappointingly, the wider system initially failed to make the changes recommended in the reviews, so two additional interventions were introduced: senior intervenors and HOPE(S). I shall come back to HOPE(S).

There is no therapeutic benefit to isolating people in long-term segregation and we would like to rename it “solitary confinement”, which is considered internationally to be a human rights abuse. I welcome the plan for the CQC to offer an ICETR to everyone detained in long-term segregation, but will the Minister tell the House when the CQC will recommence this programme? Will he commit to fund these reviews for as long as long-term segregation is in use in mental health hospitals, not just for the two years currently announced?

Equally importantly, will he commit funding to expand and extend the culture change programme HOPE(S), which has been running alongside the reviews and has been endorsed by the CQC as outstanding? Forty-seven people receiving support from HOPE(S) have progressed out of long-term segregation, following an average stay in LTS in that hospital of 441 days. Some of these people will have been moved in LTS across a number of services, so the real duration in solitary confinement will have been longer, and eight of the 47 were children and young people.

Examples of the very real differences delivered by HOPE(S) include someone hugging a brother for the first time in two years, having their first haircut in five years, eating meals at a table rather than on the floor or leaving hospital and having a full life in the community. I was pleased to see, in His Majesty’s Government’s response to recommendation 4 in my report, a commitment to help patients and families become aware of their rights. I look forward to seeing how that is going to be done.

With no mental health Bill in the gracious Speech, the panel’s recommended changes to the code of practice need to be achieved by different means. Minimum standards are urgently needed for the accommodation and care provided for people in an LTS. The pipeline of admissions continues; discharge is only part of the story. We estimate that there are still more than 100 individuals detained in LTS. Some are alone in rooms without any natural light, with just a mattress on the floor and without toilet or washing facilities. In quite a number of reviews, serious safeguarding concerns were raised about the manner in which people were being held. If clinicians and managers know that it is causing harm to an individual, does not its continued use become a patient-safety incident? The planned use of LTS, which is currently lawful, might not itself constitute a patient-safety incident, but should not the accommodation and care provided at least meet the minimum standards proposed? How does the noble Lord suggest that minimum standards can be legislated for and providers held accountable? Could CQC’s fundamental standards be used more rigorously to regulate LTS accommodation?

I have another suggestion: would it be possible to require the Secretary of State’s approval for the use of LTS in psychiatric hospitals, without needing primary legislation? There is a precedent for such approval for under-10s entering secure welfare, because it can cause serious long-term outcomes for the child. The use of LTS in both children and adults has a similar potential to cause serious long-term outcomes. My proposal would introduce a limit of a few days for urgent use of LTS, and, after that limit was reached, an application to the Secretary of State would have to be made by the chief executives of the provider hospital and the commissioner. They would have to confirm that safeguarding referrals had been made and that commissioners had visited the detained person. This would be another way to make LTS notifiable and its use monitored. Seeing the reality of LTS for themselves would mean that commissioners knew what they were commissioning and hopefully would insist on compliance with minimum standards for the accommodation and care provided. I hope the Minister will consider this proposal very seriously.

Major concerns were the lack of accountability in the whole system for the outcomes for individuals, and a lack of project management and specialist advocacy. I suggest there is a strong case for a specialist central advocacy service for people with a learning disability and autistic people in mental health hospitals. This is something His Majesty’s Government could take forward in the absence of primary legislation, as they are doing in relation to culturally appropriate advocacy. It sometimes seems a bit like the old joke: there was an important job to be done and Everybody was sure that Somebody would do it. Anybody could have done it, but Nobody did it. Somebody got angry about that, because it was Everybody’s job. Everybody thought that Anybody could do it, but Nobody realised that Everybody would not do it.

Board-level oversight of the use of LTS should change the wrongful marketing of specialist provision when, in reality, a hospital has been offering little more than warehousing people who have been failed in the community. Discharging people is one thing. Preventing their admission in the first place is even more important, but this requires government commitments to deliver on the Building the Right Support action plan. There are examples of good practice. I do not have time to describe them, but internationally we could learn from what is happening in, for example, Trieste, and the START programme in the United States, which is now in 17 different states. They focus on working with people in the community and trying to prevent hospital admission, and keeping admissions short if they happen.

The point is that without reliable and respectful family-based and relational care in the community, we as a society are knowingly increasing the chances that autistic children and adults and those with learning disability will continue to be excluded, lonely and traumatised. We will increase the chances that they will become overwhelmed at moments of transition or crisis, such as a death in the family. They will be admitted to hospital as a so-called last resort, but often a first resort, because nothing else was provided. A number of them will then be detained in LTS in a downward spiral which could have been prevented.

It is too risky to expect wise local commissioning for minority groups with poorly understood needs without some decent minimum standards for care and support to hold commissioners to account. I will end by repeating the demands of one of the experts by experience on my panel, the mother of a young man who had been traumatised by his time in hospital, including in solitary confinement. She is clear about what is needed: accountability, accountability and accountability. She reminded me that the Chancellor showed great concern about poor care in some assessment and treatment units when the right honourable Member was chair of the Health and Social Care Committee. We need the money now. I beg to move.