Queen’s Speech - Debate (5th Day)

Part of the debate – in the House of Lords at 6:22 pm on 17 May 2022.

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Photo of Baroness Hollins Baroness Hollins Crossbench 6:22, 17 May 2022

My Lords, I will focus on mental health and I declare an interest as the independent chair of a panel advising the Department of Health and Social Care on the use of long-term segregation for detained patients with learning disabilities and/or autism. I welcome the main elements of the draft Mental Health Act reform Bill, including the intention to amend the definition of mental disorder, so that people will no longer be detained solely because they have a learning disability or because they are autistic.

Long-stay hospitalisation and warehousing of people whose needs are poorly understood was intended to end when the long-stay asylums were closed—the last one for people with learning disabilities closed in 2009—but a failure to develop adequate community support, including adult social care and meaningful life chances, has simply led to the creation of new psychiatric hospitals, often in the private sector. The lack of an adult social care Bill in the gracious Speech is concerning. The noble Baroness, Lady Jolly, mentioned the number of people being detained for unacceptably long periods, but around 100 of these are cared for in long-term segregation. Commissioners lack the skills, knowledge and foresight to stop this happening, and this has to change.

The proposals have a laudable aim: to ensure that fewer people are detained involuntarily and that more people get better care, closer to home. But legislation is not enough; we need a significant culture shift across the whole health and care system. The medical model works well for cancer or infectious diseases, with its emphasis on treating symptoms. Serious mental illness is different; a focus on the social construct of recovery is key.

Everybody wants to live a meaningful life in their own home and to belong in their community, and the public discourse in recognising the dangers of loneliness is getting ahead of the legislative framework. In some hospitals today, there are still examples of the dehumanising culture that we associate with the past. My own research with social anthropologist, the late Dr Jane Hubert, evidenced some of this in a mental handicap hospital in the 1990s. Even though government policy demands personalised care, it is little understood. There have been too many recent high-profile cases where in-patient care has failed people and their families, and the Covid backlog has worsened already unacceptable barriers in access to health and social care for people of all ages who live with learning disabilities and/or autism.

Research by the Disabled Children’s Partnership identified a disproportionate impact of the pandemic on families with disabled children. In a May 2020 survey, 76% of families with disabled children said that the vital care and support they relied on had stopped altogether, leaving parents and young siblings taking on all care responsibilities around the clock, and in June 2021, the majority of disabled children were still unable to access pre-pandemic levels of therapies and health services. The SEND Green Paper has the tagline “Right support, right place, right time”. Practically, this means addressing everyday social and relational issues and developing meaningful community-based mental health support. Mental health support is needed in all schools. A distressed child cannot learn and there is much to be distressed about.

The Mental Health Act was last updated in 2007, but in many ways it still maintains its roots in the original Act of 1959. Since its last update in 2007, other legislation also impacts on the treatment of those with severe mental illness, people with learning disabilities and autistic people, including the Mental Capacity Act 2005, the Autism Act 2009, the Equality Act 2010, the Care Act 2014 and now the Health and Care Act 2022 and the Down Syndrome Act. I am hopeful about the impact of the commitments in the Health and Care Act to introduce a learning disability and autism lead for each integrated care board, and the requirement to make training mandatory for all health and social care staff on autism and learning disabilities. This reform of the Mental Health Act will also need to work hand in hand with the NHS long-term plan, and with the eagerly awaited “building the right support” action plan.

The reform of the Mental Health Act is an important opportunity for modernisation towards least restrictive practice that prioritises dignity and respect, while facilitating access to personalised mental health care in the community and, if admission is needed, ensuring that it has a clear therapeutic aim. The reforms announced in the gracious Speech have important implications for the freedoms and care of people with learning disabilities and autistic people, as well as people with serious mental illness.