Autism and Learning Disabilities: Hospital Detention

Question

Asked by

To ask His Majesty’s Government what plans they have to respond to recent reports of an autistic woman with learning disabilities being detained in a mental health hospital for 45 years.

My Lords, this Question refers to a very sad and concerning story. This Government want more people with a learning disability and autistic people to be supported in the community, not detained in mental health hospitals. That is why we are proposing reforms to the Mental Health Act, which this House is currently scrutinising. Through this, we want to help ensure that people get the support they need in the community, improving care and keeping people out of hospitals.

I thank the Minister, and I am sure the whole House was appalled by this shocking case, which came to light only due to a BBC investigation. Does the Minister agree that to prevent such a terrible situation arising again, we cannot just wait for the Mental Health Bill to get on the statute book with its current five- to 10-year implementation period? What immediate plans do the Government have to set up a system to review long-term detentions? Does the Minister agree with me that a mental health commissioner, currently under debate in the Bill, could take on this role?

I am grateful to the noble Baroness for tempting me to agree with her comments about a mental health commissioner. We have debated that, and the noble Baroness is aware that we do not feel that this is the right way forward. However, I am sure we will return to that on Report.

With regard to not waiting for the Mental Health Bill to become an Act, of course I agree. The number of people with a learning disability and autistic people who are in mental health hospitals is unacceptable, and there are still too many detained who could be supported in their communities. We have taken immediate action in allocating funding to local areas: £124 million for learning disability and autism services. We are making sure that the workforce has the right skills and knowledge through work such as the HOPE(S) model. We are providing for the CQC to deliver independent care (education) and treatment reviews. NHS planning guidance provides a continued focus on improving mental health and learning disability care, with an objective to deliver a minimum—I emphasise minimum— 10% reduction in the use of in-patient care.

My Lords, for 25 years, this woman’s detention was in long-term segregation. My review of this practice, which was commissioned by the previous Government, recommended that people in LTS must have an independent review, should have national support to reduce confinement, and be allocated an independent project manager to co-ordinate their timely discharge. But despite the unequivocal success of the ICETR programme, the HOPE(S) intervention and senior intervenors’ support, funding has been cut at the end of this year. Will the Government commit to funding these vital initiatives to end this rights-depriving restrictive practice?

I am most grateful to the noble Baroness for her contribution and expertise in this area, which I know we all look to in your Lordships’ House, as well as outside it. The points she makes are quite right and important. On this particular case, which is very sad and concerning, I understand that the person is now living in the community with 24/7 care and has been since 2022. I saw at Rampton how people were being supported out into the community with the right support. On the example the noble Baroness gave, we are very keen to improve the uptake of advocacy services, and she will know that all these matters are being addressed in our discussions on the Mental Health Bill.

My Lords, I refer to my particular interest in this subject as the younger sister of a woman with severe learning difficulties who was detained in a hospital for many years. Is my noble friend the Minister confident that this sort of tragic lengthy detention of a non-verbal woman with both autism and learning disabilities will be prevented in future by the register proposed in the Mental Health Bill to be established and maintained by integrated care boards?

Yes, because we are, as my noble friend knows, updating an Act that is over 40 years old, to keep pace with demands and changes, and to meet our expectations of providing care through a compassionate and appropriate service. There were particular circumstances in this case, which I do not seek to excuse, but it is not appropriate for me to go into them. It is important to look at specific cases.

My Lords, there are over 2,000 people with autism and learning disabilities locked up in these facilities at huge cost. Putting them into the community does not necessarily work because the infrastructure is not there. Will the Minister commit to funding the necessary care and housing for this cohort?

The noble Baroness is quite right to raise the fact that at the end of January 2025 there were some 2,065 people with a learning disability, autism, or both, in mental health in-patient settings. The population I referred to is not a static one; there are new admissions every month. We know, for example, that in January 2024, some 10,000 discharges to the community had been undertaken since 2015. So it is not necessarily the same group of people. She will know that funding decisions are made at the appropriate point. Again, this is a matter of great importance to the Mental Health Bill, and we will continue to take that through the House to get it into the best place possible.

My Lords, during the 45 years that this poor autistic lady with learning disabilities was detained and the 25 years she was in segregation, we have had Governments of all political colours, so this is clearly not a political issue. Indeed, I remember the Minister challenging me on such detentions when I was in her place. Given that, are the Government any closer to understanding the barriers that prevent such patients from being released into the community? Rather than assuming that the state always has a solution, have the Government and the NHS had conversations with local community civil society organisations so that they can support these patients once they are released into the community?

This matter is one of concern on all sides and yes, indeed, we continually have those discussions, because this is not just something for the NHS and social care—the third sector is absolutely key. I have already outlined the measures we are currently taking and the way in which we continue to monitor.

On the question about obstacles, it is about having the right community provision in place and also about having the right pathway and treating people as individuals. Increasingly, that is the case, and a revised Mental Health Act will be a tremendous support in this area.

My Lords, I hope the Minister will agree that the use of the Mental Health Act in these circumstances should be a last resort and a minimal experience. What happened to this lady is no credit to our society as a whole. Can the Minister say what steps have been taken since this lady’s experience came to light to ensure that other people are not subject to the same experience? We really need to learn from this experience.

Regrettably, that person’s experience is not a lone example. That is why, for example, the Mental Health Bill will limit the scope to detain people with a learning disability and autistic people, so that they can be detained under Section 2(3) only if they have a co-occurring mental disorder that requires hospital treatment. That is key because, in the times that we are talking about, people were detained just because of autism or a learning disability. That is not acceptable.

My Lords, I welcome my noble friend the Minister and advise her that your Lordships’ House has a specialist committee that is dealing with the review of the Autism Act 2009. I encourage my noble friend and her ministerial colleagues, both in health and social care and in education, to undertake a review of that Act to ensure that it is fit for purpose, for the needs of autistic people.

I am very grateful to the committee for its work and I am certainly looking forward to its report. The Government will respond to that report within two months. It is indeed vital work that is being undertaken.