Kirsty Stuart is senior associate solicitor in public law and human rights at Irwin Mitchell in Newcastle, and leads on cases involving autistic people and those with learning disabilities detained in mental health units.

She has taken on prominent cases from all over the country, including that of Lauren Bridges, a young woman whose death in a mental health unit near Stockport is currently the subject of a high-profile inquest.

Mother of two autistic children, Kirsty also chairs Law Society’s mental health and disability law committee and won the title of legal aid lawyer of the year for disability rights in 2021.

We ask her why autistic people can get stuck for so long in mental health units, how she helps families and what change she would like to see in the system.

Why do autistic people end up in inpatient units?

The people I see have been in the community and their care packages have broken down. It’s not their fault; it might be because of a shortage of carers, or because care staff don’t really understand them or aren’t trusted by them which can make the relationship difficult. Then the commissioners find it difficult to know instantly what to do, and one 'default' position some families report is to be assessed under the Mental Health Act, which is kind of a safe house for a short period.

But actually, once individuals are hospital-based, it’s very difficult to get them back out because the issues are still the same in terms of the lack of support and housing and related issues. The families say they were told they would be there for a week or two, and suddenly you’re at 5-6 weeks and beyond. I’ve had clients who are 16 years down the line who were told that at the beginning. I’ve got clients who were the subject of abuse at Whorlton Hall who are still detained. It’s really difficult.

 

Are these units the right environment for autistic people?

What they don’t account for is an individualised care perspective, and staff are servicing a whole ward. So quite often, these individuals are placed into long-term segregation, without their families around them to support and help.

Then there’s the sensory perspective, with the lights and noise; it’s a complete change of environment for them. If they react in a negative way, it can be difficult to interpret and individuals may get medicated. And then it becomes a negative cycle.

If the people who you are supposed to trust are then restraining you, and in your mind stopping you from having objects that are really important to you, stopping you from seeing your family, stopping you from leaving, giving you medication you may not want to take, it’s not a therapeutic environment in any way, shape or form.

I very rarely hear of people who say that hospital was actually really beneficial for these individuals.

 

Is that one of the reasons people end up stuck in hospital?

Yes, I think the risk profile of individuals goes up. It may well be one incident that led them into hospital. But then suddenly there’s incident after incident after incident because of the distress they’re displaying. And then health professionals say, ‘well, perhaps they’re not ready for discharge then’ and that stops the natural process – which should start from admission - of discharge planning.

A lot of the clients I see are not getting therapeutic interventions. It’s very much like they are in a holding position. Some people I’ve represented have been stuck behind a Perspex hatch and haven’t had any interaction with staff.

Also, some people are hundreds of miles away from their families, because it’s wherever there’s a bed. It can happen very quickly and can make it very difficult for families to visit.

 

Does this have a big impact on families?

Yes, it’s traumatic not only for the individual in hospital but very much so for the families as well, who are trying to fight in whatever way to get their loved one out because they can see the deterioration in their state.

Their loved one might have been supported by family or by one carer at a time in the community, but now they have four or five people around them and they’re being restrained all the time.

Or they’re sedated and not doing much in the way of meaningful activities. It’s really distressing for families to see them in that sort of state.

 

What rights do people and families have in these situations?

It depends on the legal framework around them. I talk families through the current situation and see if there are challenges within that. If an individual is in hospital under the Mental Health Act, there is the right to appeal to hospital managers or to a tribunal. The person appointed as the nearest relative has certain rights, including the right to appoint an advocate and right to information.

There are other challenges you can bring if there are concerns around over-use of restraint, or use of long-term segregation or seclusion. Every trust and hospital has specific policies around those. If people are ready for discharge but there is no community care package, that can be legally challenged; if the person lacks capacity, the Court of Protection can authorise a future care package and I help guide people through the process.

Other ways families can raise concerns are through NHS England’s Ask Listen Do service, the Patient Advice and Liaison Service in each hospital, or the Care Quality Commission which oversees hospitals.

Human rights are absolutely key, especially when you consider having your family near you to support you, deprivation of liberty, and over-use of restraint. You can make human rights or negligence claims against trusts or hospitals, which doesn’t redress the damage that’s done but can give families justice.

I run a pro bono legal surgery once a month. I’m active on Twitter and get contacted directly quite often there, as well as via family-to-family recommendations. There isn’t a lot of people doing what we do, and I think families trust me because I have autistic children and they know I understand behaviour as communication rather than as something to be feared.

 

What changes could be made to improve the system for autistic people?

The Government is exploring whether it will remove autism from the list of ‘mental disorders’ as part of the draft Mental Health Bill and that is anticipated. In theory, that will help, but questions remain about what would happen to individuals and whether they would be transferred into a different legal framework and still be inappropriately detained.

More than anything, though, it’s about creating more community options to move people out of hospital and getting their needs met in an environment which is much more beneficial.

I absolutely advocate for homes not hospitals for autistic people and those with a learning disability. It could be more cost-effective in the long term, too, because once their needs are being met their support needs are reduced. Ultimately, nobody wants somebody to be in hospital.