In-patient Mental Health Care: Learning Disabilities and Autism

Baroness Hollins Excerpts

Wednesday 13th December 2023 Lords Chamber

Asked by

[Baroness Hollins]

To ask His Majesty’s Government what assessment they have made of progress towards achieving the target in the NHS Long Term Plan to reduce the number of people with learning disabilities and autism in in-patient mental health care by 50 per cent by March 2024, relative to 2015 levels.

[Baroness Hollins (CB)]

My Lords, this debate follows quickly on the heels of the topical debate about my report, My Heart Breaks, and the debate from the noble Earl, Lord Russell, on the state of children’s mental health a couple of weeks ago. This debate should be more optimistic than earlier ones, because it is about the Government’s flagship programme, Building the Right Support, which launched back in 2015, and their 2022 action plan. I declare an interest, as I have been asked to continue as a member of the action plan delivery board, which I previously attended as chair of the Independent Care (Education) and Treatment Reviews oversight panel.

I am grateful to all noble Lords who have signed up to speak and to the Minister for responding to all these debates, for writing to Members about issues raised and for arranging very helpful round tables for further discussion.

To give some background, in 2015, there were 2,905 people with a learning disability and/or autism in hospital. The target in the NHS long-term plan was for this number to be halved by March 2024. There has been a 30% reduction. Also, local commissioning systems were to have no more than 30 adult in-patients with a learning disability and/or autism per million of the adult population by the same date, but for some of the 42 ICSs, more people are now in hospital than were previously recorded. Recently, His Majesty’s Government have highlighted welcome progress in reducing the number of people with a learning disability in hospital. However, Mencap suggests that at the current rate of discharge it will be 2029 before the 2024 target is reached, and data shows that the number of autistic people without a learning disability has increased since 2015. So, what is the plan post March next year?

In August this year, 5,025 restrictive interventions were recorded among this group of people, 1,140 of which were used with children. That is physical, chemical and mechanical restraint and the use of solitary confinement, as described in my recent report. Lengths of stay are unacceptably high and much longer than for the general population. The average length of stay is now 5.2 years. NHS Digital data shows that 310 of the 2,035 people currently in hospital have been there for between five and 10 years, of whom 70% have a learning disability, and 360 have been detained for over 10 years, of whom 80% have a learning disability.

Let me tell noble Lords about Ash—not their real name. Ash was admitted to a psychiatric ward two years ago at the age of 14 and diagnosed with autism after admission. Ash can take joy and pleasure from activities but on the same day become very distressed. Ash is biologically female and, like so many autistic young people, has been identifying as transgender for the past two and a half years. In primary school, Ash was described as being shy, anxious and having low self-esteem. It was challenging for Ash to move to a large secondary school, with lots of transitions to manage —moving between classes, for example.

In primary school, there had been good support from teaching assistants, but Ash felt isolated in secondary school without this support and was bullied by peers in year 7 and overwhelmed by the challenges of travelling to and from school on the bus. Ash did not share this with their parents, finding it difficult to communicate the feelings they were experiencing, and the impact of Covid-19 restrictions led to more feelings of isolation and loneliness. Ash started to self-harm and made several attempts to end their life. After being reviewed in A&E and discharged with some community support, unfortunately Ash made a further serious attempt to end their life, was admitted to the psychiatric ward and has remained an in-patient since that time.

Ash continues to engage in regular head banging and does not want to engage in therapy. Understandably, Ash’s parents do not feel they can have Ash home, due to ongoing safety concerns and worries about the lack of support for them at home, despite asking for help in the past. The hospital says that it has been trying to find a new “placement” for Ash for at least 18 months—but calling it a placement may be part of the problem: it is a new home that Ash needs. Meanwhile, Ash is stuck on the ward and the uncertainty about their future just leads to further anxiety and more attempts to self-harm. One child too many is spending their teenage years on an adolescent ward, missing out on opportunities to develop independence during adolescence.

Could this admission have been prevented through earlier autism diagnosis, earlier recognition and support at school, and robust community mental health support from the start? Are current waiting lists for assessment setting the scene for more stories like Ash’s for years to come, and more long admissions to hospital? The action plan summarises several cross-agency commitments, as well as providing guidance for commissioners to help them to commission for people’s lives, not just to commission services for people to be fitted into.

Long-term hospitalisation is a result of failures in our social care system, in the flexibility of our community health responses and in our education system—which is too ready to exclude children with complex needs—and of a lack of suitable housing. It often follows traumatic experiences in a person’s life, such as the death of a close family member or being the victim of an assault. This debate allows us to question why the target has failed and, indeed, whether it was the right target in the first place. Is it the number of people in hospital that is the issue, or the purpose of the admission and the quality of assessment and treatment that they receive in hospital? I have consulted a few leaders in the learning disability world. One suggestion is that a better target would be based on equality. For example, the proportion of people in in-patient settings and their length of stay should be no higher than it is for the rest of the population.

The truth is that there has been insufficient focus on improving community support to prevent admission. The measure of success is not about what action has been taken or what has been spent; it is about people’s experiences. What is being done to address this? What investment is being made to pilot new ways of working in the community? Are evidence-based models from other countries being piloted in the UK and, if so, where?

There is significant concern that there has been a lack of focus on people providing direct support who are not part of any professional body and do not have necessary training and experience to support people in crisis. Too often, people in crisis with high support needs are supported by agency staff with minimal experience of supporting people with learning disabilities and autistic people. What is being done to improve the quality and suitability of support for people who need more specialist skills?

One central reason why the March deadline will not be met is the failure to tackle perverse incentives in the system. Social care is underfunded, and this is creating conditions in which people with a learning disability and autistic people cannot access the right support, and can then move quickly towards crisis. Very few integrated care systems have created safe spaces to avert crises, and avoid either criminalisation or hospitalisation.

My letter to the Secretary of State regarding my report set out the need for pooled budgets between health and social care providers. These are needed to break down the bureaucratic barriers that too often prevent discharge. The RedQuadrant report Building the Right Support: An Analysis of Funding Flows makes the same crucial point:

“Strong partnerships, pooled budgets, and joint commissioning arrangements significantly improve performance on achieving discharges for people”.


We are not short of evidence. The issues are clear, as are the solutions. Action and will are needed to bring about change. Some of that is cultural change: a willingness to include people who are different in our communities, and to go the extra mile to help them to stay at home. The financial cost would be less, and just think of the improvements in the quality of people’s lives. We need the change, and I very much hope the Minister will show us his will in concluding this debate and responding to the questions that I know noble Lords will ask. I beg to move.