Mental Health Bill [HL]

Baroness Ramsey of Wall Heath Excerpts

2nd reading
Monday 25th November 2024 Lords Chamber

[Baroness Ramsey of Wall Heath (Lab)]

My Lords, today I will focus on those aspects of the Bill that concern children and young people with learning disabilities, autism or both. I also want to note that I found listening to the lived experience of the noble Baroness, Lady Parminter, very moving indeed.

My formal interest in this issue dates from my being the independent chair of NHS England’s children and young people transforming care steering group—for children and young people with autism and learning disabilities—from 2017-20, and before that as chair and non-executive board member of various NHS organisations. My close personal interest, however, is lifelong, as the younger sister of Patricia, who I mentioned in my maiden speech.

Patricia was born in a much less enlightened time than we enjoy now, with a learning disability that denied her expressive language and deemed her at the time of her early childhood in the 1950s as a mental defective under the then mental deficiency legislation. My brother Jim followed soon after. My younger sister and I came some years later, to our loving parents’ great joy, but neither she nor I ever lived with my sister Patricia, as she was taken away from our parents when she was seven—before we were born—to a huge and forbidding mental hospital near Birmingham, three long bus rides away from where our parents lived. They had to write each month to the hospital authorities for permission to visit, a maximum of once a month.

When our father died in 1990, my mother asked me to become Patricia’s co-guardian with her and gave me a box that he had kept containing all the paperwork concerning Patricia. The letters from my father asking for permission for Jim, my brother, to visit his sister once she was removed from the family home are heartbreaking to read, as he was always refused, even at Christmas time, because Jim was under 12. So Jim did not see his sister for years.

By the 1960s, these rules had relaxed, and my other sister and I were taken to visit one Sunday a month. I am ashamed to say that I dreaded those visits as a little girl—not because of Patricia, who I liked to see and spend time with, but because the heart of the hospital was a forbidding Victorian building where patients with mental health issues were kept. Sometimes I would hear screams and see figures trying to put their arms out of the tops of windows. At the side of the hospital for the learning disabled—by then called mentally handicapped—which was physically a much pleasanter part of the site, we would sit and eat with and cuddle our sister, who was always delighted to see us, especially our mother.

In time, my parents got a car, and my father would drive us to a café with Patricia. Sometimes we were made welcome, and sometimes not so much. My sister never went to school as she was 18 by the time the duty to educate children with learning disabilities came in following the 1970 Act. My mother found that heartbreaking.

As a child, I did not know that my parents were campaigning to get Patricia moved nearer home, hoping to take advantage of a more benign regime that was developing in the 1970s of long-stay campus-style hospitals where young adults with learning difficulties could live, still under NHS care but with fewer restrictions on the number of visits and more activities for patients—later residents. Eventually, my parents were successful, and those were happier years, with much more contact and my sister being able to visit the home that she had not grown up in.

After my father’s death I took up the campaigning mantle from him to make sure that Patricia genuinely benefited from the latest initiative: care in the community. My sister lived her last years, until she died in 2018, in a real house near our family home with three ladies she had been with previously, and we could visit whenever we wanted. My brother died 30 years ago, so he did not live to see this. My other sister and I had moved to London, but my mother was delighted, as were we, that Patricia lived in a proper house with its own kitchen with home-cooked meals and we could visit whenever we liked.

When the noble Lord, Lord Stevens of Birmingham, in his previous role as chief executive of NHS England, asked me to establish and chair the steering group in support of transforming the care of children and young people with autism and learning disabilities, your Lordships can see why I jumped at the opportunity. As the chair of the steering group, my task was to help bring together all those organisations which had important roles in reducing the number of children and young people with autism, learning disabilities, mental health conditions and behaviours that challenged, but with no criminal backgrounds, being detained.

The steering group included representatives from the Department of Health and Social Care, the Department for Education and local government, as well as charities advocating for these children and young people. What became crystal clear was that detention happens when local education, health and children’s social care services either do not or cannot meet their complex needs appropriately. Although the world has clearly moved on a long way from the days of my sister’s incarceration, I am afraid that I heard some very distressing accounts from families and hospital staff about the reality of detention, as eloquently described by my noble friend Lady Keeley, and not so short of enforced solitary confinement, as described so eloquently in the important work of the noble Baroness, Lady Hollins.

At the same time, I saw inspiring examples of what is possible when local community services come together around the needs of children and young people, including on a visit to a special school in north London where I saw pupils who in other circumstances would have been locked away in secure hospitals. The head teacher worked with a multidisciplinary team, including social workers, speech and language therapists, psychologists and others, who liaised closely with the pupils’ families.

One key issue was raised repeatedly by families and those youngsters who could speak for themselves in the stakeholder engagement meetings we held. Although NHS guidance states that each child or young person in such a situation should receive a care (education) and treatment review—CETR—and DfE guidance requires that they should also receive an education, health and care plan, or EHCP, this was all too often either not happening in a timely manner, or it was happening but not being acted upon. This was partly a matter of resources, partly a matter of priorities, and partly a lack of joined-up work between health, education and local government.

This important Bill includes proposals to strengthen current arrangements, and this is to be greatly welcomed. In particular, the assumption that children and young people with autism and learning disabilities should not be detained if at all possible—and, if this is not possible, for only the minimum of time and with a proper review and plan for treatment in place—is a huge step forward. I am delighted that it has received wide support across the political parties, beginning with the noble Baroness, Lady May, when she was Prime Minister and subsequently under more recent Governments. It shows families such as mine that society is beginning to make real progress towards greater understanding and humanity in its attitude towards people with learning disabilities and autism—albeit sometimes more slowly than we would wish for.

However, legislation on its own can take us only so far. Genuinely sustained improvement will require multiagency work—including at government level, as my noble friend Lady Keeley said—with high levels of co-operation in the community to provide effective support for children and young people at risk of being detained. Stronger multiagency community services, combined with the Bill’s provisions, would ensure a very different life for those children and young people and their families from the one my sister had.