Reducing mental health detention of people with autism and/or learning disabilities

On New Year's Day, the Sunday Times featured the story of 'A', a 24-year-old man with learning disabilities and autism who has been locked in a small room since 2017: "A Saturday night takeaway pizza, pushed through the hatch by his mother and eaten alone in his room, is the highlight of his week." The picture below is the hatch. The story was also covered by ITV, The Guardian and The Mail. 

Although A's story is shocking, it's sadly not unique. I've represented several people with autism and/or learning disabilities who have been detained under the Mental Health Act 1983 (MHA), as well as their families. In this blog I offer some thoughts on legal, policy and practical changes that could prevent admission to hospital and get people discharged speedily into homes in the community. I recommend reading the recent responses of Mark Neary, and Dr Chris Ince too. Thanks to them, Lisa Perry and Tor Butler Cole QC for reviewing an earlier draft.

A human rights disaster 

'A' is one of 2,085 children, young people and adults with a learning disability and/or autism detained under the MHA (data at the end of November 2021, and see this excel sheet). These include 200 under 18s. Of the total, 190 had a delayed transfer of care, the key reasons identified being social care and lack of suitable housing. The average length of detention was MHA is 5.4 years. The number of reported restrictive interventions (restraints or seclusion) in September 2021 was 3,620 including 595 on under 18s. A whopping 355 people have been in hospital for more than 10 years. 

Some of these people are detained under Part 3 of the MHA (patients involved in criminal proceedings) and for the purposes of this blog, I'm putting them to one side. This leaves 1,095 people detained under Part 2 (sections 2 or 3) of the MHA, who will continue to be detained until they have suitable housing and care in the community. In other words, they are detained in hospital for mental health treatment (see s.145 MHA), even though many - unless they have a mental illness - don't need actually need mental health treatment in a hospital. The MHA's definition of "medical treatment" is very wide, so if someone benefits from the milieu of nurses being around, that counts as medical treatment. 

This legal fiction may well be a breach of the person's right to liberty, given that "the validity of continued confinement depends upon the persistence of such a [mental] disorder" as the European Court of Human Rights famously held in the grandfather of mental health cases Winterwerp v the Netherlands. The European Committee for the Prevention of Torture agrees: "Involuntary placement in a psychiatric establishment should cease as soon as it is no longer required by the patient's mental state."

The difficulty is that the opposite of institutionalisation isn't liberty (ha, that would be easy!), it's community. Achieving the right to live in the community, as set out in Article 19 of the UN Convention on the Rights of Persons with Disabilities, [1] requires housing, specialist support services, access to leisure, sports, culture, transport, family. 

Community support services 

The fragility of community provision and the lack of respite provision causes huge anxiety to families. Dr Christianne Pollock is the mother of a teenager with severe autism and learning disabilities. In reaction to the 'Patient A' story in the Sunday Times, she tweeted, "my son is only ever 24 hours away from an ATU". (an ATU is an Assessment and Treatment Unit, a psychiatric hospital)

There are amazing housing providers and care providers out there, and many incredibly dedicated care staff: all under-paid and many under-appreciated. That said, people with learning disabilities and/or autism are regularly failed by local authorities by inadequate care planning and provision. The government's austerity approach has made social workers' jobs more difficult: often there simply isn't sufficient resource to meet needs.

Paragraph 20.20 of the MHA Code of Practice says, "Compulsory treatment in a hospital setting is rarely likely to be helpful for a person with autism". In many parts of the country there is a lack of what are known as 'crash-pad' facilities, adapted houses that can accommodate a person with a learning disabilities and/or autism who is experiencing distress. These could be shared between Trusts as they would not be used all the time. Without these, and absent spare capacity in social care and residential educational settings, a psychiatric hospital becomes the only option for a person with learning disabilities and/or autism who is experiencing distress, even though it's agreed that hospitalisation is unlikely to be helpful. (Incidentally, providing temporary care to an autistic person in a mental health unit should only happen in a sensory friendly ward: here's a handy guide).

As mentioned, Article 19 of the UN CRPD calls on states to provide services to people with disabilities that "prevent isolation or segregation from the community". The fact that 1,095 people with learning disabilities and/or autism are still detained under Part 2 MHA, some for a very long period of time, indicates that the government isn't properly implementing the CRPD, 12 years after ratifying it. This could form a central plank of reports by NGOs and the Equality and Human Rights Commission to the UN CRPD Committee which when it examines the UK's compliance (probably in 2024).

Responsible Clinicians have too much power 

Once in a hospital, the person's sensory needs or behaviours that challenge often mean they experience escalating levels of restriction (seclusion, restraint or sedation) which is counterproductive and leads to more restrictive practices. As Chris Ince has told me, seclusion has a paucity of sensory input so is attractive to staff to use for autistic patients, but once it has started it is hard to end.

Any patient in hospital is removed from (i) the place, (ii) the people and (iii) the daily routine they know. According to Dr Chris Ince, for an autistic person, these three elements - physical, relational and procedural security (for the person and those looking after them) should only ever be carefully adjusted one at a time. Changing all three at once is distressing and may cause behaviours that challenge.

Lisa Perry is a mother of a person with a learning disability and autism. Her son was detained for most of last year, faced increasing levels of restriction and at one stage had 10:1 staffing provision while he was in a small s.136 suite for months, ostensibly so that ten staff could run in and physically restrain him. Both his family and his community care provider (who the hospital prevented from working with him due to 'Health and Safety' concerns) considered this completely unnecessary.

It is difficult or impossible for the family - or for that matter their lawyers - to challenge the approach or decisions to use restrictive practices. That is because the MHA delegates all responsibility for Part 2 patients' care and treatment (including every part of the daily regime) to the "Responsible Clinician", (RC) who is usually a Consultant Psychiatrist.

There is no legal requirement for a learning disabled or autistic patient's RC to have expertise in learning disability or autism, although the MHA Code of Practice mentions at para. 36.3 that the RC should have "the most appropriate expertise" to meet the patient's needs. In a recent case, an RC's lacked qualification and experience in autism. We pointed this out to the Trust which responded that they didn't have anyone better to be the RC. This meant that the patient was treated as if he had a mental illness and the RC kept talking about the patient's "recovery", as if someone can recover from a learning disability. Not only did the family find this bewildering, but it meant that the patient was treated potentially negligently. In what other field of medicine would we tolerate this? "Hello madam, I'm a cardiac surgeon and I'll be performing your hip replacement today!"

The RC can change the person's medication without consultation or agreement with the person or their family. The RC can prevent the person from having s.17 MHA leave to see their family. In Lisa's case, the RC banned her son from seeing the family because when he returned from a trip out with them, he was noisy. The family thought this was entirely natural, because her son was expressing that he had a good time and didn't want to be back in the seclusion room. To the staff, he was a noisy danger.

Although a Second Opinion Appointed Doctor is supposed to review the care and treatment of patients who lack capacity to consent, the only way a patient or their family can challenge decisions by the RC is to use the hospital's complaint processes, which usually result in the hospital managers' agreeing with the RC.

That then leaves making an application for judicial review. Not only do families need legal aid to protect them from adverse costs, but it is notoriously difficult to persuade the Administrative Court that the RC acted in a way that was, in law, unreasonable or irrational.

It would be helpful if Parliament would implement the recommendation made by Sir Simon Wessely's committee looking at MHA reform, that a patient or their representative should be able to challenge individual treatment decisions at a Tribunal.

Follow the money

NHS England funds inpatient specialist hospital care, and local NHS Clinical Commissioning Groups (CCG) fund non-specialist services. The cost of inpatient care is eye-wateringly expensive, whether the hospital is run by the NHS or the private sector. Section 117 of the MHA places a joint duty on the patient's local authority and CCG to provide "aftercare", which includes housing and care provision. Section 117 is precious economic and social right for people being discharged from MHA detention, but perversely, it is a barrier to getting people discharged.

Section 117 MHA acts as a disincentive for local authorities and CCGs who can save enormous sums of money by keeping people in hospital. Once the person has been discharged, they pay for the entirety of care which can include housing. All they need to do is say that they are searching for a community placement, that this patient has "complex needs", it is very difficult to find a provider, and it is taking a long time... There is no legal or financial sanction on local authorities / CCGs for failing to find or establish suitable community provision. While community care is less expensive than hospital care, it is still money that local authorities and CCGs would rather avoid spending.

In human rights terms, this is clearly unsatisfactory. The State has positive duties under Article 5 (the right to liberty) to get people out of detention when it is no longer necessary. Further, a person detained in hospital may be experiencing a violation of Article 3 ECHR (the prohibition on torture, inhuman or degrading treatment or punishment). The European Court of Human Rights has said that resource limitations cannot justify a breach of Article 3.

As a solution, the MHA could be revised to create a financial penalty on local authorities and CCGs that fail to provide a community placement and care package for an inpatient with learning disabilities and/or autism from (say) six months after the date on which the person is ready for discharge. That money should go to the detained person as automatic compensation for the ongoing Article 5 breach.

Tribunals, courts and lawyers 

An oddity of the Mental Health Tribunal is that there is no requirement for it to have a medical member with expertise about learning disabilities or autism when dealing with cases of people with learning disabilities and/or autism (contrast with forensic cases or cases involving children and young people where there is a requirement for relevant expertise).

A further difficulty is that the Tribunal has no jurisdiction over conditions of detention or discharge destination. It cannot compel a local authority to find a discharge destination in the community: in this sense, the Tribunal is a useless process for many patients in hospital where the blockage is the lack of community provision.

Although the Tribunal can adjourn and make directions for evidence to be filed, its tendency is to only do so when discharge is six to eight weeks away. In cases where the RC says that they will lift the s.3 MHA as soon as the patient has a discharge destination, the Tribunal will probably make no directions or recommendations, as it knows the discharge will take many months.

The government's proposal "to extend the role of the tribunal so it is able to grant leave and transfer, and to direct services in the community" is welcomed, as is its proposal "that there should be an obligation in legislation on health and local authorities to take all reasonable steps to follow the tribunal’s decision."

The Tribunal should have a new duty to take into account the often excellent and detailed recommendations of Care and Treatment Reviews. For an example of how the CTR and other experts' recommendations are ignored, see this thread by Lisa Perry.

Because Tribunals are currently toothless, solicitors practising in mental health law (but not public law or the Court of Protection) are unfortunately unlikely to be able to make progress getting people out of hospital and into their own homes in the community.

The Court of Protection is a potentially powerful forum where progress can be made. And it will become even more important if learning disability and autism are removed from the MHA. As Lucy Series has pointed out, those with learning disability and/or autism currently detained under the MHA will switch to being detained under the Mental Capacity Act 2005.

An example of how to use the Court of Protection (CoP) to make progress in discharging a person with learning disabilities and/or autism is the approach of HHJ Hilder, Senior Judge of the CoP in the case of Tony Hickmott.[2] The judge has agreed to actively case manage Tony's discharge which is due to be in May 2022. She has listed monthly case management hearings and directed the Director of Adult Social Care of the local authority to convene and chair fortnightly discharge planning meetings that report back to the CoP which then makes directions to overcome any barriers. 

Although the CoP can and should be used more, a barrier for families wanting to access it is the unavailability of non-means tested legal aid, which the Legal Aid Agency should revisit. Until then, several of us practising in the CoP do these cases pro bono.

Given the nature and degree of the human rights concerns, and the number of people inappropriately detained for significant periods of time, there should be a radical change of approach. The Equality and Human Rights Commission (EHRC) could play a coordination role in arranging legal representation for the people with learning disabilities and/or autism detained under the MHA, so that each person receives representation by lawyers experienced in the four relevant intersecting domains of mental health law, mental capacity law, public law and civil claims. That way there could be sharing of strategies on how to implement the right to live independently in the community, rather than as a thousand individual problems. The EHRC has powers under Article 33(2) CRPD in its role as the independent mechanism to promote and protect rights and monitor the implementation of the CRPD.

Another innovation would be if the Tribunal and the CoP would sit at the same time in relation to each case of a delayed discharge. There are now plenty of Tribunal judges are also District Judges in the CoP. The cases could be managed by the same judge in both jurisdictions (with wing members when sitting as the Tribunal) so that speedy and coordinated progress is made. The starting point could be the 355 people who have been detained for more than 10 years.

Media 

Media scrutiny of individual cases has been invariably useful in making progress. Hospitals and public bodies dislike bad press and sometimes try to prevent exposure. The NHS Trust detaining her son asked Lisa Perry not to comment on social media (which she sensibly ignored). Some public bodies have tried to injunct families from telling their story. The best example is Walsall Council preventing Bethany's dad Jeremy from tweeting about Bethany (Bethany was locked in a seclusion room for almost two years). When Tor Butler Cole QC and I represented Jeremy in the High Court, the Council withdrew its application and the court made a pro bono costs order against the Council.

Another example is the BBC and Sky's November 2021 application to lift reporting restrictions in the case of Tony Hickmott. The hospital, supported by the Official Solicitor, argued that media should not be allowed to report Tony's name or hospital. HHJ Hilder roundly rejected their concerns, finding that: 

"the circumstances of this case unquestionably fall into the domain of proper public interest. A man has been detained for many years beyond the point when clinicians considered him fit for discharge. Resource pressures are at least a part of that story, there being nowhere else to meet his needs. I have no doubt that this is an issue on which there should be open public debate on an informed basis." [49].

The judge endorsed the parents' submissions: 

"It’s their story too. Unless the application is granted, they won’t be able to set out the extent of their struggles to restore their family life."

As Dr Chris Ince has said, for Patient A there may well be progress thanks to the coverage in the Sunday Times, but "for other individuals in similar circumstances an absence of media scrutiny will lead to an absence of change."

A further benefit of media scrutiny is that it can encourage whistle-blowers to come forward. Following the media attention on Tony Hickmott's case, Phil Devine who worked with Tony between 2015 and 2017 contacted the BBC and said that Tony was the "loneliest man in the hospital".

Trauma and restitution 

A final point is this. People with learning disabilities and/or autism who have experienced and survived institutionalisation often carry the psychological scars for many years. As Lisa Perry has said, "The trauma felt by the person and their family never leaves." In a similar way that victims of torture are provided with psychological, medical and legal rehabilitation, so too should people with disabilities and their families - often the champions of their rights - be offered these services, as an acknowledgment of the harm that the state has caused. [3] 

Recommendations 

This overly long (sorry!) blog post is intended to contribute ideas about who could do what to reduce the numbers of people with learning disabilities and/or autism detained under Part 2 of the MHA, and to ensure that they have good quality community support services. My ideas aren't exhaustive, but include the following:

1. Each local authority and NHS Trust could work together to develop list of autistic people and people with learning disabilities who are most at risk of being hospitalised if there is a breakdown of community support services, and for each person on that list, in close consultation with that person, their families and support staff, develop a Hospitalisation Avoidance Plan. 

[Note - since this blog was written people have reminded me that each LA is supposed to have a "Dynamic Support Register", but all that is required is people on the list are "offered" a Care and Treatment Review which are panels that make recommendations only... it seems that there is room to improve, given that people are still being admitted... latest stats are 65 were admitted to hospital during October 2021. Of these 45 were first admissions in a year, 10 were readmissions within a year of the previous discharge, and 10 were transfers from other hospitals - source.] 

1. Local authorities could collaborate with each other by pooling budgets to create 'crash-pad facilities' in each region of England and Wales, to prevent the need for (re)hospitalisation in the event of a breakdown of community support services.
2. There could be a new requirement for Mental Health Tribunals hearing cases concerning people with earning disabilities and/or autism to have a medical member with expertise in those areas.
3. There could be a requirement in the MHA that an RC for a patient with earning disabilities and/or autism has a qualification and expertise in those areas, and if that is not possible, introduce a requirement on the detaining hospital to appoint an external RC with tele-responsibility for the patient.
4. Tribunals could be given the power to make binding decisions in relation to any aspect of a detained patient's care (including in relation to treatment, and leave) and in respect of community care provision
5. Tribunals and the Court of Protection could case manage delayed discharge cases so that both MHA and MCA matters can be dealt with in a coordinated manner to ensure safe and speedy discharge into a home in the community.
6. There could be a training requirement for all learning disability doctors, nurses and care staff on trauma and how to provide trauma-informed care and support.
7. Section 117 MHA could be amended by introducing a financial penalty for local authorities and CCGs that fail to identity a home and a care package within a certain time period (six months?) from the date on which the patient was deemed ready for discharge.  
8. This money could go to the detained person as compensation for the ongoing breach of their Article 5 rights (it would have to be properly administered etc.). 
9. The Equality and Human Rights Commission could, under Article 33(2) CRPD, protect rights by coordinating cases concerning patients with learning disabilities and/or autism detained under the MHA to ensure representation by solicitors and counsel who have expertise in MHA, MCA and public law. 
10. NHS England could publish a document listing the hospitals that are currently detaining the people with learning disabilities and/or autism under Part 2 of the MHA, and ensure that when each person is discharged, that bed is not used by someone with autism or learning disabilities: this would effectively place a moratorium on further learning disability / autism admissions.
11. When inspecting these hospitals, the CQC could check that each person with learning disabilities and/or autism detained under the MHA has been referred to the EHRC for legal assistance, and could analyse the Hospital Avoidance Plan to see what went wrong. 
12. Non-means tested Legal Aid could be made available for s.16 MCA applications to the Court of Protection concerning people with learning disabilities and/or autism detained under the MHA for whom discharge is delayed: these cases concern Article 5 ECHR so there is an equivalency to non-means tested legal aid in s.21A MCA cases (for those who say there is free Tribunal representation, see my remarks about the futility of the Tribunal in cases where the patient has nowhere to be discharged to). 
13. Lawyers could ask the Court of Protection to proactively case manage delayed discharge cases concerning patients with learning disabilities and/or autism who lack capacity to decide on residence and care. The fact that a detained patient has no identified community placement is not a barrier to applications to the Court of Protection being made. 
14. The MHA could be amended to prohibit NHS Trusts and private hospitals from putting pressure on, or otherwise encouraging, families not to use media and social media in relation to their loved ones. 
15. Every person with learning disabilities and/or autism who has been detained under the MHA could be assessed for trauma, including iatrogenic psychological harm caused by institutional care, and could have access to trauma-informed psychotherapy funded by the NHS. 

Please let me know what you think about these ideas, either by email or on Twitter @DrOliverLewis. 

[1] For more information on Article 19 of the CRPD, see the article that Genevra Richardson and I wrote in 2020: "The right to live independently and be included in the community", International Journal of Law Psychiatry, Mar-Apr 2020; 69:101499. doi: 10.1016/j.ijlp.2019.101499. Let me know if you'd like a copy. 

[2] Aswini Weereratne QC and I are instructed by Ravinder Brar of RKB Law to act for Pam and Roy Hickmott.  

[3] For full disclosure, I am Chair of Trustees of Respond, a charity that provides trauma-informed psychotherapy to people with autism and/or learning disabilities who have experienced harm.