WRITTEN EVIDENCE SUBMITTED BY DR OLIVER LEWIS

(MBH0020)

Advancing the rights of people with learning disabilities and/or autism

(A) Introduction

1. These submissions focus on the plight and rights of people with learning disabilities and/or autism who are detained under the MHA or at risk of being so detained. The MH Bill as currently drafted is wholly inadequate to meet the aim of reducing the number of people with learning disabilities and/or autism in psychiatric hospitals. More creative amendments are needed. If adopted in its current form, it will not achieve the aim of reducing the number of people with learning disabilities and/or autism in psychiatric hospitals.

(B) My interest and expertise

2. I am a health and human rights barrister at Doughty Street Chambers, London. My practice largely focuses on the rights of disabled persons, particularly people with mental health issues, learning disabilities, and/or autism. I practise in the Court of Protection, and am regularly instructed in community care matters, judicial reviews, civil claims and – sadly – in inquests that touch on the deaths of people with disabilities or health issues.
3. I have a longstanding interest in mental health law. While I was studying for a Masters degree in 1999, I became part-time research assistant to the expert committee that the then Labour government established under the Chairpersonship of Professor Genevra Richardson. I was subsequently employed by the Department of Health in the development of the Green Paper, and I was responsible for analysing all submissions received in response to it.
4. I was called to the Bar in 2000, and spent 16 years working at a legal advocacy NGO based in Budapest. The NGO worked on the rights of people with mental health and learning disabilities across central and eastern Europe and latterly in Africa too. I visited psychiatric hospitals and social care institutions in around 20 countries, worked on strategic litigation, and conducted law reform advocacy on issues including mental health law, mental capacity law and deinstitutionalisation.
5. During that time, I was part of the civil society effort to negotiate what became the UN Convention on the Rights of Persons with Disabilities (“CRPD”), adopted by the UN General Assembly in 2006. I have been involved in several CRPD initiatives, including drafting materials and providing advice to UN and Council of Europe bodies, working in countries as diverse as Georgia, India, Viet Nam, and Taiwan, helping governments and civil society on CRPD implementation. In 2015, I completed a part-time PhD on the development of mental capacity law in international human rights.

(C) Data

6. NHS England produces monthly data on the “Transforming Care” cohort of people with learning disabilities and/or autism in mental health units.[1] Last month there were 2,050 people with learning disabilities and/or autism who were inpatients in mental health hospitals. Of those, 92% were detained under the MHA.
7. 1,100 people (54%) were detained under s.3 MHA. The figure in January 2022 was 1,060 (52%), so there has been a minuscule increase in three years.
8. The December 2024 data show that 30% of the cohort detained under the MHA have learning disabilities without autism, 50% have autism without learning disabilities, and 20% have both. In 2015, the figures were 54%, 15% and 23% respectively. It is now neurodiversity that is the common presentation, rather than learning disabilities. In my experience, autistic myths and stereotypes abound, and neurodiversity is poorly understood by mental health professionals, social care professionals, lawyers and judges alike.
9. Data show that over half of the total cohort of 2,050 have been in hospital for over two years, 435 of them under s.3 MHA, and of those, 85 have been detained for over ten years. 140 people have been detained under the forensic provisions in Part 3 of the Act for over ten years.
10. Around a fifth have a date planned for them to leave hospital, and 51% have no planned discharge or transfer – again, that includes the 45% people detained under Part 3 MHA for whom it would understandably be more difficult to pinpoint a discharge date.

(D) Policy considerations

The right to live in the community

11. My observations are framed by the international framework of the rights of persons with disabilities. The JCHR will be aware of the work done globally over the last half-century on deinstitutionalisation. There is much experience, including in this country, on what needs to be done to shift people with learning disabilities and/or autism out of institutional settings such as psychiatric hospitals.
12. Article 19 of the CRPD sets out the right to live independently and be included in the community.[2] Although the CRPD is not part of law in England and Wales, the UK has ratified the treaty, and the government has obligations to take steps to implement it. Implementation should happen in a manner that accords with the demands of those whose rights are currently being violated.
13. Indeed, there is an obligation under Article 4(3) of the CRPD in the development of legislation and policies to implement the CRPD (which would include the implementation of Article 19 CRPD which in the UK would include MHA reform), the government should closely consult with and actively involve persons with disabilities, including children with disabilities, through their representative organisations. It is regrettable that the JCHR has not produced any EasyRead information about its inquiry that directly impacts upon people with learning disabilities and/or autism, and has not invited an autistic person or a person with a learning disability or any witness from a representative organisation to give evidence.
14. In 2017, the CRPD Committee published a useful guide in its General Comment No. 5 on Article 19 CRPD, and much of that document is relevant to the JCHR’s investigation through the human rights lens into the MH Bill.[3]
15. The space created by the MH Bill is a golden opportunity to progress the implementation of Article 19 CRPD. I invite Parliamentarians to make further amendments to the MH Bill, and I set out some suggestions in the Recommendations section, below.

Mental health laws

16. Mental health laws do little to promote independent living. They make lawful acts that would otherwise be unlawful. So, false imprisonment becomes lawful detention. And injecting a person with chemicals that alters the way that the brain and body functions is justified under the MHA as therapeutic treatment which is necessary.
17. The MHA framework makes little sense for people with learning disabilities and/or autism who do not present with a mental health problem that requires hospital treatment. I would suggest viewing people with learning disabilities and/or autism through the lens of the social model of disability, which locates the problems not in the person but in disabling barriers in society: environmental, financial barriers as well as legal and attitudinal barriers.
18. So while I support the government’s aim of shifting people with learning disabilities and/or autism from mental health detention, I am concerned that the MH Bill, as currently drafted, would achieve little in pursuit of that aim.
19. The government has set itself several targets to reduce the numbers under the “Transforming Care Agenda”. All the targets have been missed, as set out in the JCHR 2019 report “The detention of young people with learning disabilities and/or autism”.
20. No useful policy goal is served by the NHS spending millions of pounds detaining people with learning disabilities and/or autism in the wrong place, using the wrong approach, which causes physical and psychological harm to the detained person and traumatises their families. The MHA Code of Practice (2015 edition) at paragraph 20.20 acknowledges this:

“Compulsory treatment in a hospital setting is rarely likely to be helpful for a person with autism, who may be very distressed by even minor changes in routine and is likely to find detention in hospital anxiety provoking.”

21. Despite the widespread agreement that psychiatric hospitals are inappropriate places for people with learning disabilities and/or autism, they continue to be sent there for significant periods of time.
22. Mental health hospitals are noisy, dangerous, antitherapeutic and boring places. It is rarely possible to meet the needs of a person with a learning disability in these settings. It is often impossible to meet an autistic person’s sensory needs in a hospital. Autistic meltdowns are commonly met with seclusion, restraint and sedative medication: these restrictive practices cause trauma, more behaviours that challenge which are again met with restrictive practices and the cycle continues.
23. In my caseload I regularly see the physical and emotional harm that institutionalisation causes – this is not limited to psychiatric hospitals, of course, but my comments here are in relation to hospital settings. Many of my clients who have been unnecessarily detained in psychiatric hospitals have PTSD because of their hospital admission. It is a national scandal that healthcare services so often cause harm rather than help people get better.

Loss of autonomy under MHA detention

24. Once in a psychiatric hospital, a patient with learning disabilities and/or autism is usually detained under the MHA. One of the reasons why the MHA is an inappropriate framework is that the MHA hands total control over the patent to the Responsible Clinician (“RC”), usually a consultant psychiatrist. I have represented people in several cases where the Responsible Clinician had no expertise in learning disabilities and/or autism, and treated the person as if they had a mental health issue, using a mental health recovery model and a behavioural carrot/stick approach to manage behaviours that challenge, an inappropriate approach that is bound to fail because it treats the person as if they are able to choose to regulate their behaviour, and when they display behaviours that challenge, they are deliberately being naughty.
25. It is difficult or impossible for a person with a learning disability and/or autism (or their family, if the person lacks capacity to do so) to challenge a RC’s decisions. The RC has total power over the patient. I have acted in several cases where the RC has had no learning disability or autism qualification or expertise, and has excluded family members who have complained, who the RC and staff see as an irritation and it is much easier for staff if family are prohibited from visiting. The RC can describe this as a therapeutic decision in the patient’s best interests, but for the family it feels like retribution, and – worse – actively locking out the very people who know the person best.
26. There is no recourse to the patient or their family except (a) initiating the hospital’s complaints procedure or (b) making an application for judicial review. Judicial review requires specialist lawyers and legal aid to protect against adverse cost risks. Judicial review is a very high bar to cross, because the claimant has to prove that the RC’s decision was unlawful, which in the grey zone of psychiatry, is extremely difficult.

Discharging people detained under s.3 MHA

27. As noted, the MHA is not the reason that people with learning disabilities and/or autism are in psychiatric hospitals. The reason they are there is that there has been a failure of housing and/or care in the community at the local level. Once detained under the MHA, the duty to identify a place to live in the community and to provide a package of care that meets the person’s needs is located in s.117 MHA. This provision places a joint duty on the person’s ‘home’ local authority and NHS Integrated Care Board (“ICB”). If the person has been sent to a hospital out of county (which is very common), the home local authority and ICB could be many miles away and the from the person.
28. The two public bodies are usually content for the person to remain in hospital because, while the person is in hospital, they do not have to pay for the person’s care. As soon as the person is discharged from hospital, the local authority and the ICB have to pick up the bill, For “complex” cases, the community services needed to meet the person’s needs may be very expensive, because the person might be assessed as needing two or three care staff with them at all times (I have seen up to six). This is an expense that each local authority and ICB would want to avoid.
29. The current s.117 arrangement therefore creates a disincentive for local authorities and ICBs to take timely action to find and fund housing and a care package in the community soon after the Responsible Clinician has assessed the person as clinically fit for discharge from s.3 MHA. In my view, this is a major barrier to timely discharge, and s.117 requires reform, and I return to this in the Recommendations section, below.

People with learning disabilities and/or autism are not in psychiatric hospitals because of the MHA

30. People with learning disabilities and/or autism are placed in mental health units because there has been a breakdown of housing and/or community care that has precipitated some sort of crisis, and a mental health hospital is the only place they can go. There are not there because of the MHA.
31. From the perspective of a person with learning disabilities and/or autism, being in a psychiatric hospital is a traumatic and unnecessary experience – it does not matter to them or their experience which legal framework authorises their detention.
32. The MH Bill should therefore avoid making tweaks to the procedure by which the deprivation of liberty of a person with learning disabilities and/or autism in a psychiatric hospital can be authorised one way or other. Rather, the aim should be to introduce into law duties on public bodies achieve a reduction in the numbers of people with learning disabilities and/or autism who are in psychiatric hospitals.

(E) Comments on the Bill

Aims

33. Clause 3(4) of the Bill would amend the MHA to create two relevant aims: (a) prevent people from being detained under section 3 of that Act (admission for treatment) on the basis of autism or learning disability, and (b) to make related changes in relation to the application of that Act to autism and learning disability.
34. Three comments on the aims:
1. The aim should not be prevention of detention under s.3 MHA. Rather, the aim should be prevention of admission to a psychiatric hospital. The attempts so far in Parliament to introduce amendments that make other forms of detention lawful miss the point that it is the detention in a hospital per se that causes harm, not the legal provision that makes the detention lawful.
2. Aim (b) aims to make related changes in relation to the application of that Act to autism and learning disability. However, there is nothing in the Bill that would have any useful impact to reduce the number of persons with learning disabilities and/or autism detained in psychiatric hospitals.
3. Aim (c) should be introduced “to facilitate the discharge into the community of patients with learning disabilities and/or autism who are currently detained under s.3 MHA”.

CTRs

35. Clause 125B of the Bill would place Care and Treatment Review meetings (“CTRs”) on a statutory footing. This will have little effect, because CTRs must happen if a person requests them in circumstances set out in policy. CTRs are now well embedded in the system. They are usually helpful and insightful, and panel members are often people with an in-depth knowledge of the system including as parents who have also been let down by the system. CTRs provide an independent view of the entirety of the person’s experience and they examine root causes of problems, including looking at why the person ended up in hospital and seeing whether whatever went wrong in the community has now been fixed. CTRs make sensible suggestions to relevant health and social care bodies and can go much further than the Mental Health Tribunal in their recommendations. As such, they are an extremely helpful mechanism.
36. The Bill could strengthen CTRs by creating a duty on the relevant bodies to implement the CTR panel’s recommendation. Clause 125C of the Bill does not do this: it places a duty on the RC and commissioners to “have regard to the recommendations” of a CTR. A duty to have regard to the CTR panel’s recommendations is an invitation to continue to ignore the recommendations.
37. The proposed new duty is weak and wholly inadequate. No RC or commissioner would currently say that they disregard CTR recommendations. Commissioners and RCs already have regard to CTR recommendations, and once they have had regard to them, they can safely ignore them because they have no specific legal duty to implement their recommendations.

Dynamic support registers

38. Clause 125D of the Bill elevates the current policy of “Dynamic Support Registers”[4] into statute. The NHS England guidance already says:

“Dynamic support registers (DSRs) are the mechanism for local systems to identify children, young people and adults (with consent) who are at risk of admission to mental health inpatient services without access to timely dynamic support. They provide the tool to:

1. use risk stratification to identify people at risk of admission to a mental health hospital
2. work together to review the needs of each person registered on the DSR
3. mobilise the right support (for example, a Care (Education) and Treatment Review, referral to a keyworker service for children and young people, extra support at home) to help prevent the person being admitted to a mental health hospital.”
1. While there is an attraction of elevating policy into legislation, Clause 125D would introduce no substantive improvement to the system.

Removing learning disabilities and autism from the ambit of s.3 MHA

40. Clause 3 of the Bill is the big change. It would remove from the ambit of s.3 MHA a person with learning disabilities and/or autism who does not have a presenting psychiatric disorder that would make s.3 detention available.
41. I note that the MH Bill retains the status quo in Part 3 MHA which are the forensic provisions. Presumably the reason for this is that detention under a hospital order in a psychiatric hospital is seen as conferring an advantage on the person: it is deemed more humane to detain a person with learning disabilities and/or autism who has committed a criminal offence in a psychiatric hospital than in prison.
42. Removing learning disabilities and/or autism from the scope of s.3 MHA would not confer an advantage on them unless there are concrete measures that (a) speed up the discharge of people with learning disabilities and/or autism currently unnecessarily detained under s.3 MHA; and (b) prevent future admissions to a psychiatric hospitals.
43. The Bill contains no such concrete measures.[5] The consequences of removing learning disabilities and/or autism from the ambit of s.3 MHA will be as follows:

Consequence 1: Detention under DoLS

44. It will be possible to authorise the deprivation of liberty of a person with learning disabilities and/or autism in a psychiatric hospital by using the “Deprivation of Liberty Safeguards” (“DoLS”) pursuant to Schedule A1 to the Mental Capacity Act 2005.
45. It will be permissible for the detaining hospital to issue itself an urgent authorisation for up to 14 days. Thereafter, the local authority can issue a standard authorisation for up to 12 months
46. I would imagine that the at-risk cohort will all lack capacity at the relevant time to make decisions about their care. It will be straightforward to determine that it is in the person’s best interests to be deprived of their liberty in hospital because in these cases there is some crisis which means that either there is no housing or no care in place in the community to which the person can be discharged.
47. I note a new amendment moved by Baroness Browning would create a new “Case F” in Schedule A1 to MCA 2005.[6] This would make it impermissible for a local authority to grant a standard authorisation depriving the person of liberty under the DoLS regime in a mental health hospital if (a) the person is objecting or (b) if the person has an deputy/attorney, that person objects.
48. This is an attempt to fill the gap that would be created if a person with learning disabilities and/or autism cannot be detained under s.3 MHA. While it would have the advantage of enabling an application to the Court of Protection to be made pursuant to s.21A MCA 2005 (for which P has access to non means tested legal aid), it will not prevent admissions of persons with learning disabilities and/or autism to psychiatric hospitals.
49. Under new Case F, a DoLS authorisation would be available only if the person does not “object”. I have several concerns about this amendment.
50. My first concern is a principled one. Why should the MHA 1983 hand over to the MBA 2005 an ongoing human rights violation? How does this amendment advance the policy aim that has been in place since Winterbourne View of the “transforming care agenda”, which is to reduce the numbers of people with learning disabilities and/or autism in psychiatric hospitals, and to ensure that there are supports in the community that meet their needs?
51. From the perspective of the person with learning disabilities and/or autism spending months and years needlessly detained in a psychiatric hospital, it matters not whether their deprivation of liberty is authorised under the MHA or the MCA. Again, Parliamentarians need to look at why people go into hospitals and why they get stuck there. The answers are in the community.
52. My second concern is a practical one. I fear that health and social care professionals will misinterpret a person’s behaviours and conclude they are not “objecting” because they do not have the capacity to object. The behaviours will be thought to be caused by the disability and be deemed unrelated to the hospital environment. Therefore a person will not be in Case F and their deprivation of liberty can be authorised under the DoLS regime. I have acted for multiple clients (including NHS bodies and local authorities) in cases where people with learning disabilities and/or autism have been stuck in hospital: none of the detained people have wanted to be in hospital. The proposed Case F would, in my view, rarely remove people from the DoLS ambit. I remain concerned that people with learning disability or autism who cannot be detained under s.3 MHA would straightforwardly be able to be detained in hospital under the DoLS regime.
53. A final concern with proposed Case F is that very few people with a learning disability and/or autism have a health and welfare deputy or attorney. If Case F remains as an idea, the amendment at para 5A(5) could be changed to: “The second condition is that a done or deputy has not made a valid decision to consent to each matter to which P objects, or P’s close family members have been consulted and have not objected to the deprivation of liberty.” This would enable families to have a formal voice, and would prevent the need for emergency applications to be made to the Court of Protection for personal welfare deputyships.

Consequence 2: Detention under the criminal law

54. There is no data on this, but my impression is that people with learning disabilities and/or autism are increasingly being criminalised for assault against care staff. Increasing numbers of care providers are taking a “zero tolerance” approach to violence against their staff. Even now, people with autism in particular are at risk of being prosecuted, even if their behaviour is a result of unmet needs: in other words, had their care needs been met by public bodies, the assault would not have taken place.
55. If s.3 MHA becomes unavailable, the risk of prosecution and detention pursuant to a hospital order under s.37 MHA (potentially with a s.41 MHA restriction order) increases. The person would then be seen as forensic patient and spend far longer in hospital than they otherwise would have done under s.3 MHA. This concern has also been identified by learning disability psychiatrists.[7]

Consequence 3: Detention for mental health reasons

56. The NHS England data from December 2024 show that patients with learning disabilities and/or autism already often have other psychiatric diagnoses: 12 % of the cohort had personality disorder on admission, 28% have a “mental disorder”, and 11% had another diagnosis. Of the 2,050 cohort, 190 have gained a diagnosis of autism since admission.
57. If the MH Bill passes and a hospital is not permitted to detain a person in a crisis under s.3 MHA, there is the option of using other mental health diagnosis as the reason to detain them under s.3 MHA. In my own caseload, I have seen several people with autism being diagnosed with personality disorder. There is a debate within psychiatry about this, given that the two conditions share a variety of presentations, and the relationship between them remains unclear.[8]
58. Lord Touhig raised this concern at the second reading of the MH Bill in the Lords: “Given that eight in 10 autistic people experience mental health issues, without the right safeguards, there must be concern that the new provisions could simply lead to a continuation of the current intolerable situation.” There are no safeguards in the MH Bill that addresses this concern.

Delayed entry into force 

59. My view is that it would be appropriate to delay the entry into force of the s.3 MHA amendment only if the Bill contains clear and measurable actions that introduce new duties on public bodies to progress the discharge of people with learning disabilities and/or autism (especially those with delayed discharges), and prevent new admissions to psychiatric hospitals.
60. The key is good quality housing and good quality care that meets the person’s needs locally, with crisis plans that prevent the need for an admission to hospital to arise. This is a golden opportunity for law reform, but the MH Bill as currently drafted is wholly inadequate because it does not address the reasons why people with learning disabilities and/or autism end up in psychiatric hospitals.
61. The Bill's explanatory notes detail significant financial requirements for implementing the reforms, including £2.5 billion for housing and care related to reforms for individuals with learning disabilities and autism. These financial requirements must turn into commitments. That said, there is much funding in the inpatient mental health system. NHS commissioners should shift budgets from inpatient settings to improve community provision.
62. The perverse funding situation has been acknowledged by local authority leaders. Commenting on Tony Hickmott’s grossly delayed discharge in response to media approach during the now concluded Court of Protection proceedings, Robert Persey, Brighton and Hove Council's executive director for health and adult social care said to the BCC that there had been unacceptable delays in Mr Hickmott’s case and said the process was both complicated and costly. Care in the community must be funded by the local authority. Mr Persey was quoted by the BBC as saying, “It has taken far too long. It's complicated trying to get all the elements like housing and carers all ready at the right time. Local government [funding] is continually being cut. Yet we have a responsibility to look after these people to the optimum level we can, and the funding is really challenging to find and achieve that.” [9]
63. Without legal duties on public duties as to what to do with that money, we will be stuck for another generation in the cycle of inaction and excuse.

(F) Recommendations

(1) Crash pad facilities

64. The Bill could place a duty on each local authority (either alone or by pooling budgets with neighbouring authorities) to create “crash-pad facilities” in each region of England and Wales. These are intermediary placements, where a person could move to for a temporary period with their domiciliary care staff, if they are unable to live in their own house because. This could arise, for example, if the person has had a meltdown and has broken furniture or appliances. The person would move to the crash-pad facility temporarily while the house is fixed and adapted to better meet needs.
65. The concept of a crash-pad is not new, but the government has never committed fully to the concept and never placed a legal duty on local authorities to put in place the provision.
66. In December 2012, the Department of Health published a report "Transforming care: A national response to Winterbourne View Hospital".[10] The report was a response to criminal activities at Winterbourne View hospital. It stated that the Department of Health was “equally concerned with the care and support experienced by all children, young people and adults with learning disabilities and/or autism who also have mental health conditions or behave in ways that are often described as challenging”.
67. The report stated that:

1.5 Starting now and by June 2014, we must – and we will – transform the way services are commissioned and delivered to stop people being placed in hospital inappropriately, provide the right model of care, and drive up the quality of care and support for all people with challenging behaviour.

1.6 This is not easy. Developing the right range of services locally to build up necessary expertise is a complex task – though that will be made easier with pooled budgets. But there is clear – and readily available – guidance and evidence for what works. That guidance has been available for years. There are no excuses for local health and care commissioners failing to come together to Commission and design the services which will enable most people to live safely with support in their communities. and prevent unnecessary admissions to hospital. There are no excuses for continuing to commission the wrong model of care." 

68. The report set out a programme of action to transform services so that people with learning disabilities no longer lived inappropriately in hospitals. The policy vision was to shift inpatient care to community care. This vision was “dependent on developing the range of responsive local services which can prevent admissions to hospital or other large institutional settings and allow any existing patients to be moved to better settings, closer to home.” (p. 22)
69. The report set out “Key principles”, among which for health and social care commissioners was a “focus on early intervention and preventive support to seek to avoid crises (eg behavioural strategies). Where crises occur, they should have rapid response and crisis support on which they can call quickly.” (p. 52)
70. In October 2015, NHS England and others published the policy document “Building the right support”.[11] This was a national plan to develop community services and close inpatient facilities for people with a learning disability and/or autism who display behaviour that challenges, including those with a mental health condition.
71. The report set out services that are needed, given that "[p]eople with a learning disability and/or autism have the right to the same opportunities as anyone else to live satisfying and valued lives and to be treated with dignity and respect. They should expect, as people without a learning disability or autism expect, to live in their own homes, to develop and maintain positive relationships and to get the support they need to be healthy, safe and an active part of society." (p.22)
72. The report correctly identified that “the challenge facing commissioners is as much about preventing new admissions and reducing the time people spend in inpatient care by providing alternative care and support, as it is about discharging those individuals currently in hospital. The task requires: advocacy, early intervention, prevention, ensuring the right set of services are available in the community.” (p.22)
73. The report set out an expectation for commissioning services: “to enable the commissioning of less inpatient care and more preventative, community-based services and support”. (p.35). It shared promising practice, including from Herefordshire which announced a number of innovative crisis intervention projects including “a ‘crash pad’ pilot providing short term accommodation for people who need crisis intervention in situations where there has been a placement breakdown or termination of tenancy.”
74. The report set out a new National Service Model, that included person-centred, planned, proactive and coordinated care and support, “with early intervention and preventative support based on sophisticated risk stratification of the local population, person-centred care and support plans, and local care and support navigators/keyworkers to coordinate services set out in the care and support plan.” The National Service Model also included the provision of “alternative short term accommodation for people to use briefly in a time of crisis” to enable people with learning disability and/or autism to be supported to live in the community with support. (p.25)
75. On 6 January 2017, NHS England published “Transforming Care. Model Service Specifications: Supporting implementation of the service model”.[12] This report stated that, “...where these primary preventative approaches prove insufficient, and behaviour that challenges may persist or become more serious to the point where a person and/or others are at risk of serious harm and where people are at risk of exclusion from ordinary community settings (including admission to hospital), there may be a need for more intensive support from specialist multi-disciplinary teams and/or, where the degree of concern about the impact of behaviours is greatest, access to an Enhanced/Intensive Support service.” This service “includes therapies, rehabilitation techniques or interventions designed to help the person return to their desired lifestyle, as well as support to people returning to community settings from inpatient settings”.
76. By October 2015, NHS England had published “Supplementary model for commissioners of health and social care services”.[13] This document explained what good services for people with learning disability and/or autism should look like. It said: “Commissioners should ensure that all adults with a learning disability and/or autism that challenges have a person centred support and care plan” (p. 5). This plan “should include advance crisis and contingency planning that has been developed and agreed with the individual, their family, providers and other professionals” (p. 6)
77. The supplementary model for commissioners document set out the need for commissioners to provide “Alternative short term accommodation (available for a few weeks) should be available to people, as and when it is needed, to be used in times of crisis or potential crisis as a place where people can go for a short period, preventing an avoidable admission into a hospital setting.” (emphasis in original, p.14). The report recognised that, “there will be times when individuals need more intensive support than that normally available through local specialist multi-disciplinary teams. Providing this support in the community allows greater opportunity to assess the person in their natural environment and can help to avoid or manage a crisis, and prevent potentially traumatic or inappropriate hospital admissions.” (p. 26).
78. If a person with learning disability and/or autism is admitted to hospital, the document stated at p. 31 that “[s]ervices should seek to minimise patients’ length of stay and any admissions should be supported by a clear rationale of planned assessment and treatment with measurable outcomes. Hospitals should not become de facto homes; discharge planning should start from the point of admission - or earlier for a planned admission.”
79. There are many good ideas in policy, but the policy has not been rolled out. I invite the JCHR to suggest amendments into the MH Bill to place a duty on local authorities and ICBs to create crash-pad facilities. These would then be in several people’s crisis plans and would prevent the need for MHA detention from arising. This would help the Bill achieve its aim of preventing MHA admission of people with learning disabilities and/or autism.

(2) RC expertise

80. There is no requirement in law or policy that a detaining hospital must ensure that a Responsible Clinician assigned to a patient with learning disabilities and/or autism has qualifications or expertise in learning disability and/or autism. An amendment could be made to the MH Bill to place a duty on the detaining hospital.
81. If it is not possible because there is no potential RC employed by the hospital, the duty on the detaining hospital could be to appoint an external RC with tele-responsibility for the patient who can work remotely with staff on the ground. From the patient’s perspective, it is better to have expert oversight, albeit remotely, rather than none, because it is more likely that the right sort of care is provided and that delayed discharge is avoided.

(3) MHT expertise

82. There is no requirement for the medical member of the Mental Health Tribunal to have any expertise or experience in learning disability or autism when adjudicating cases concerning a patient with learning disability or autism.
83. An amendment could be introduced to the Bill requiring the Tribunal service to allocate a medical member with such expertise when dealing with a learning disability or autism case. This would help the Tribunal make appropriate decisions and recommendations about discharge. The same could be required of the lay member.
84. The learning from CTR panels is that one of the reasons their recommendations are so insightful is the composition of the panels, which often include a parent who has been in the system. A requirement for expertise and experience could be injected into the Tribunal system which would mean that Tribunals become more creative in making case management directions to local authorities to develop discharge plans, and we would see more interface in these cases between Tribunals and the Court of Protection.

(4) MHT powers

85. The MHT 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 community leave under s.17 MHA.
86. The MHT could be given the power to direct a local authority and ICB to put in place community services if a patient has been deemed fit for discharge.
87. What would make most difference in my view, is to introduce into the MH Bill a new duty on the MHT to direct a local authority to make an application to the Court of Protection in a case where:

(a)           the patient is a person with learning disability or autism;

(b)          they are (or soon will be) medically fit for discharge; and

(c)           either the local authority and ICB have not identified a discharge destination (a place to live) or a care package in the community; or there is a dispute about discharge destination or the care package.

88. A dispute arises in all sorts of scenarios, for example: where a public body proposes the patient be discharged somewhere and the patient indicates disagreement; or their family members consider that the residence is not in the person’s best interests perhaps because of its location or compatibility with other residents; or where there is disagreement about the care package which could range from number of staff in the property or in the community, or the level of restrictions proposed, including restrictions on the use of internet and social media.
89. Placing a duty on the MHT to direct the local authority to make an application to the Court of Protection will enable the court to give case management directions for evidence about the person’s discharge destination. The Court of Protection is better suited than the MHT as it can hold multiple hearings over a long period of time: only one judge is needed and it is usually straightforward for the same case to be listed before the same judge on multiple occasions, which is not the case for a three-panel MHT.
90. It is sometimes asserted by local authorities that an application to the Court of Protection cannot be made if a person is detained under the MHA. This is incorrect. An example of the Court of Protection playing an instrumental role in overseeing overly-protracted discharge planning is the Court of Protection case of Tony Hickmott, which concluded in 2024. This case has been widely reported, and there is no prohibition on using his and his parents’ names. I represented Tony’s parents Pam and Roy pro bono in the Court of Protection proceedings. Tony had been detained under s.3 MHA in a hospital since 2001 and he had been fit for discharge since 2013. By 2019 he was still detained under s.3 MHA, so his parents made an application to the Court of Protection. After several hearings, Senior Judge Hilder directed monthly hearings to oversee the delayed discharge, and Tony was eventually discharged to his own home in the community in October 2022.[14] The case continued for nearly two years because of concerns about the quality of care Tony receives in his home.[15]
91. Several MHTs hearings took place during between 2019 and 2022 when Tony was detained under s.3 MHA. During his period of detention the MHT always said Tony was lawfully detained. The MHT did not direct his discharge because he had nowhere to go. Had his parents not made an application to the Court of Protection in 2019, it is likely that Tony would still be detained under the MHA. In my view, the Court of Protection is instrumental in these cases of delayed discharge, where there is very likely some sort of problem with arranging housing or care in the community.

(5) MHT frequency

92. If a person with a learning disability or autism has been deemed fit for discharge but they are still in hospital, something has gone wrong with community provision. I have had cases where the person’s home is not ready for them to return to because it needs adaptations and those have not yet happened; or the person has nowhere to return to; or there is no care provider and the person cannot be discharged home without a care package in place.
93. The longer a person is detained under s.3 the fewer opportunities they have to make applications to the MHT. This makes little sense. If a person is unnecessarily deprived of their liberty for long periods of time, they should have greater opportunity to challenge the lawfulness of detention, not less.
94. I propose that either the patient or someone on their behalf is permitted to make applications every two months. The alternative, as recommended above, is to introduce an amendment to the MH Bill to place a new duty on the MHT to direct the local authority to make an application to the Court of Protection. The Court of Protection can then make decisions about where it is in the person’s best interests to live, and to receive care and – if needed – to deal with capacity to make ancillary decisions (including decisions about having contact with others, decisions about using the internet and social media, and decisions about entering into sexual relations) and make best interests decisions as appropriate where the person lacks capacity.

(6) Court of Protection legal aid for family members

95. To facilitate people’s discharge, it is vital that the person’s family have access to non-means tested legal aid. In the Hickmott case I acted pro bono, and worked for around 25 days on the case over five years. My instructing solicitor spent even more time working for free. Every other person involved in the process was paid from public funds (the private hospital in which Tony was detained was also in receipt of NHS England funding).
96. Reliance on the goodwill of lawyers to represent families (who often drive changes for their loved ones) is unsustainable. These cases are often multi-year, require significant client engagement and inter partes communication, and are at the complex end of welfare matters in the Court of Protection.
97. In my experience, parents of a person with learning disabilities are the most important people for their loved one with learning disabilities and/or autism, and have been their champions for their lives. They have battled through children’s services, paediatric services, educational services, the transition to adult services, and then the desperate situation of adult social care. They have often had to leave jobs, relocate to be closer to their detained loved one. They too have been traumatised and unable to access support.
98. It is very easy to be ineligible for means-tested legal aid in the Court of Protection. Given that the person’s Article 5 and 8 ECHR rights are at stake in all cases of delayed discharge, I invite the JCHR to recommend to the Ministry of Justice to ensure public funding when representing families in cases where the courts are trying to shift a person from hospitals to the community and where they are trying to prevent the need for admission to hospital to arise.

(7) Section 117 MHA

99. Section 117 MHA is available to a person who has been detained under s.3 (and other long-term provisions) of the MHA. It places a duty on the patient’s home local authority and ICB to provide aftercare, which includes organising housing and care package to meet the person’s needs.
100. Section 117 MHA is the golden nugget in the MHA. It is the only economic and social right within an Act that, as noted above, removes civil and political rights. Section 117 is a powerful enabler of community services. 
101. However, because it places the burden of paying for community care onto the shoulders of the local authority and the ICB, it creates a disincentive for those bodies to take prompt action to enable the person to be discharged from MHA detention and to move into the community.
102. Section 117 MHA should be amended to introduce a financial penalty on local authorities and ICBs that fail to identity a home and a care package within a certain time period (for example six months) from the date on which the patient’s RC said that they would discharge the patient from s.3 if they have a place to be discharged to, and a care package that meets their needs. The fine should be the same amount of money that the relevant NHS commissioner would otherwise pay the detaining hospital to provide treatment and care to the patient.
103. This amendment would reduce local authority excuses such as “We have been searching but no provider has yet come forward” on repeat month after month. If the provision does not exist, the local authority and ICB should create the provision. A financial penalty for each day of delayed discharge will focus minds and will ensure that a delayed discharge is actioned by local authority executives and by counsellors.
104. I make this suggestion realising that many local authorities are on the brink of bankruptcy. That is a wider political problem. People with learning disabilities and/or autism and their families have a right not to be detained for longer than is absolutely necessary. It costs money to provide community services, but it costs a very significant amount of money to keep them in hospital settings too.
105. In many cases, local authorities and ICBs have been reluctant to take active steps because as soon as the person is discharged, they have to pay for the aftercare under s.117 MHA. Amending s.117 to create a financial incentive for local authorities and ICBs to take timely action to facilitate a person’s discharge would be a concrete step to advance human rights.

(8) Equality and Human Rights Commission

106. An amendment could be introduced into the MH Bill to require the Equality and Human Rights Commission (“EHRC”) to coordinate cases concerning patients with learning disabilities and/or autism detained in psychiatric hospitals, to ensure representation by solicitors and counsel who have expertise in mental health law, mental capacity law and community care law: those are the three areas of law that are needed to help people with learning disabilities and/or autism who are in hospital. The solicitor would review the person’s records, and in particular the CTR, and would analyse whether the CTR panel’s recommendations have been implemented, and develop a legal strategy to bring the unnecessary hospital admission to an end.
107. A central coordination mechanism is necessary because the ad hoc nature of legal representation is having little impact on the numbers of people with learning disabilities and/or autism in the psychiatric system. The numbers are small enough to enable a central coordination system to work effectively.
108. Few law firms have contracts with the Legal Aid Agency in all three areas of mental health, mental capacity and community care. Given that most people with learning disabilities and/or autism in hospital are likely to lack capacity to instruct a solicitor (and are likely given that they are detained in a hospital to take practical steps to contact a solicitor with a legal aid contract in three areas of law), it is essential that there is a new mechanism to identify those people and match them with a suitably qualified solicitor who can represent them in the MHA. Depending on the facts, the solicitor might need to make an application to the Court of Protection and they might need to open a community care file to advise on judicial reviewing the local authority’s failure to provide services that meet a person’s needs under the Care Act 2014. 
109. Only NHS England knows who the 1,100 people detained under s3 MHA are, and where they are. There could be appropriate data sharing between NHS England and the EHRC to ensure that each person in that cohort is assigned a solicitor with the relevant expertise and contracts with the Legal Aid Agency.
110. This would advance Article 33(2) of the UN Convention on the Rights of Persons with Disabilities which places a duty on the state to ensure that an independent body protects and promotes the rights of persons with disabilities. While the EHRC has been engaged in some conversations with relevant NGOs and lawyers over the last few years, it has taken few practical steps to advance the rights of people with learning disabilities and/or autism who are detained in psychiatric hospitals or at risk of being admitted. It has potentially important role to play, and an amendment to the MH Bill could provide it with a duty to play a coordinating role in reducing the numbers of people with learning disabilities and/or autism detained in hospital settings.

(9) Care Quality Commission

111. The MH Bill could introduce a new duty (or require the Secretary of State to issue secondary legislation that achieves the same thing) on the Care Quality Commission (“CQC”) that when the CQC inspects a mental health hospital and identifies a patient with learning disabilities and/or autism detained under the MHA, it must make a referral to the EHRC for legal assistance. This would reduce the risk of a detained person with learning disabilities and/or autism falling through the gaps.
112. 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. 
113. 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. 

(G) Conclusions

114. The JCHR has a crucial role to play in providing Parliament with an analysis through the lens of human rights. As currently drafted, the MH Bill is wholly deficient and if adopted, will not progress the rights of people with learning disabilities and/or autism.
115. I hope these submissions assist the Committee with its work, and I would be happy to provide more information and answer questions Committee members may have.

(FEB 2025)