Supplementary written evidence submitted by Margaret Flynn, Chair of the National Mental Capacity Forum and Kirsty Keywood, Centre for Social Ethics and Policy, University of Manchester (MHB112)

Detention Criteria

We do not believe that the draft Bill’s proposal to remove learning disabilities and autism as conditions for which people may be detained under s.3 Mental Health Act 1983 (MHA) will, without more, address the existing impasse. The system-justifying status quo does not suggest that fewer people with learning disabilities and people with autism will be detained. It is our concern that alternative rationales will be identified to provide alternatives to the starkly finite options of people being removed from their homes and placed in 24/7 NHS commissioned treatment or left to “carry on as you are.” The backdrop is the grossly eroded and underfunded community support and the low threshold for invoking the MHA on behalf of these populations.   Below, we profile a range of concerns pertaining to the failings in current practice and suggestions for modest, followed by more radical reform options that would maintain the current inclusion of people with autism and learning disabilities within the scope of s.3 of the Act.  These suggestions draw on our collective experience of reviewing people’s experiences of abuse and neglect in institutional settings and our review of law and policy.

The negative impacts of institutionalizing people with autism and learning disabilities under the MHA

If we consider the experience of families with relatives who were harmed and have died in Assessment and Treatment units, the rationale for removing people with learning disabilities and autism from s.3 of the MHA appears compelling:

• The failure to give effect to the experience of families is a critical risk with a long history. It has potentially devastating consequences. The rules, processes and structures of Assessment and Treatment Units for adults with learning disability and/ or autism permit open-ended and overtly violent and abusive interference in their lives. Cawston Park Hospital – just as Winterbourne View Hospital 11 years ago - exemplifies the high risk, high consequence of excluding families.  The decision-making of managers and staff was oppressive, rigid and unjustified – and yet invisible to independent authorities or judicial bodies.   Patients at Winterbourne View and Cawston Park Hospital were detained under the MHA and so would have been subject to CQC visits, tribunal sittings and SOAD visits, yet the alarming experiences of service users remained unidentified and acknowledged for so long.
• Although there are provisions in the Mental Health Act to provide IMHA support to detained people, they do not appear to have impacted on the experience of people detained for periods of longer than 72 hours.   In our experiences of reviewing abusive and neglectful practices in institutional settings, this has revealed that the decision-making of staff and managers has unchecked influence.
• Even much looked forward to and highly valued home visits and phone calls are vulnerable to being cancelled or disallowed as a result either of their relatives’ perceived transgressive behaviour or a clinician’s last minute decision.
• Using complex, clinical language of diagnosis, treatment and therapy without explanation is a powerful means of excluding families. It reduces the likelihood that families will be able to defend the interests of their relatives on an equal basis.
• The Care Quality Commission is more likely to defer to the expertise of “Experts by experience,” that is, groups of people with learning disabilities who are appointed to assist in the periodic but relatively infrequent inspection  of services provided under the MHA, for example, than to families who visit more frequently, have closer knowledge of a service’s operational realities and are anguished about the potential backlash if they complain. 
• The expertise of parents and families’ “interpretive support”[1] remains to be valued widely in the culture and practice of care under the MHA.  This is as critical a role as that of interpreters for people who do not speak the language of the majority. The exclusion of families and misguided beliefs concerning their “over involvement/ protectiveness” is demonstrably detrimental to people’s care, assessment and treatment.

Prospects are uncertain in these turbulent times. However, local authorities, the NHS, Integrated Care Boards, service providers, families and their relatives with lived experience are united in seeking to ensure that the human and financial resources for each of us are employed to best effect.

Despite the best of intentions, the NHS, the service used by the majority of us, enjoys greater public esteem than services which are specifically available to people with learning disabilities and autism. Special services such as Winterbourne View Hospital, Atlas Homes, Whorlton Hall and Cawston Park Hospital, for example, were characterised by segregation, inattentive physical and mental health care, arbitrary violence, restraint, avoidable harms and wretched under-occupation.[2] Critically, people’s “protest behaviour” becomes the rationale for their continued detention. In turn, the services to which they may potentially be discharged decline to receive them because of their reported behaviour. 

It is vital to acknowledge that private sector versions of long-stay institutions such as ATUs are not and have never been on families’ wish-lists. For some adults with learning disabilities and autism, the MHA became the vehicle for placing them in indefinite detention. It is our hope that future changes made to the MHA do not replicate such practice. If people have life-long, physical health needs, there is no expectation that they will be placed in a hospital for life. If they develop mental health challenges, there should be a complementary expectation that they will not be in a hospital for life.   Any legislation attending to the needs of people with disabilities must take seriously the rights contained in the UNCRPD, in particular the right to independent living contained in Article 19.  It should also embed more firmly the rights of families to be consulted and involved in decisions about their loved-one’s care and the importance of families to service users’ right to respect for private and family life in line with Article 8 of the European Convention on Human Rights (e.g. G v E [2020] EWHC 621.

We do not believe that vulnerability to inappropriate institutional care of disadvantaged populations resides in removing them altogether from the Act’s purview. Without seismic improvements in community service provision and funding, we share the concern that people with autism and learning disabilities may find themselves funnelled into detention through the criminal justice system or the Liberty Protection Safeguards.

We also acknowledge the concerns of many professionals who are concerned that the current period of detention under s.2 may not be long enough to attend to a robust assessment of a person’s presentation and the formulation of a plan to meet their needs.

Alternative Solutions (1)

To improve outcomes for this group, and in the absence of investment in changing an obsolete model of service provision and in mental health services for everyone,[3] we outline initially some “sticking plaster” possibilities:

-          Making admission the admission of a person with a learning disability and/ or autism for mental health treatment contingent on (i) a report being required by the placing commissioner stating why the placement provider has been selected and comprising an undertaking to visit the placed person in situ (ii) there being an address to which the person may be discharged (iii) a named person responsible for liaising with the family to determine, inter alia, how S.117 funding will be spent (iv) a requirement that named, senior professionals from a person’s locality of origin will contribute to at least one in-person review during every period of (renewed)  detention.

-          Acknowledging the advocacy and expertise of parents and families’ “interpretive support.” Families are around for longer than individuals/ groups of professionals; they are credible sources of biographical information, including information about their relatives’ skills, interests and how they express their will and preferences; they are intergenerational; and they are linked to wider networks, some of which are professional networks relevant to the circumstances of their relatives. The exclusion of families and misguided beliefs concerning their “over involvement/ protectiveness” is detrimental to people’s care, assessment and treatment.   Families’ insights (unless their involvement is objected to by their realtive) should be a feature of all Care and Treatment Plans and Care and Treatment Reviews.

-          Placing commissioners, MHA Inspectors and families must be advised when an “inadequate hospital setting” is selected and the rationale for its selection.   Their views must be taken into account in proceeding with a placement in that setting. This is because “Building the Right Support” (2022) states:

Where, exceptionally, admissions to an inadequate hospital setting occur, this will be with the involvement of the patient (where they have capacity or based on a best interest decision-making process[4] where they do not) and their carer or family. It will also be based on an assessment of the risks and benefits that concludes this is the most favourable option for that individual patient. Additional mitigations and safeguards will be put in place to monitor their safety, wellbeing and treatment [our emphasis]. 

Those mitigations safeguards ought, in our view, to be expressly included in the application for admission and feature in the Care and Treatment Plan as well as the Care and Treatment Review.

Explicit tolerance of abuses captured by undercover investigators and CCTV enables uncorrected injustices and abuse to endure. Placing commissioners identify Assessment and Treatment units with vacancies and not even bleak track records have any bearing on placements. Since the form of “involvement” is not described in policy, it cannot be known how this is addresses families’ experience. There is a persistent thread of disbelief and hurt that family expertise is ignored in favour of employees’ and organisations’ custom and practices.  Pathologising the advocacy of families is a high risk strategy.   We further recommend that the rationale for selecting an ‘inadequate’ placement for Mental Health Act detention make clear the additional mitigations and safeguards that will be put in place and that these are also attended to in the person’s Care and Treatment Review and Care and Treatment Plan.

-          Care and Treatment Review Reports must be provided to tribunals and to hospital managers called upon to exercise their powers of discharge under s.23.

Alternative Solutions (2)

Radical change in patterns of services requires, inter alia, a vision of more desirable futures, political and personal leadership which embraces the leadership of people with learning disabilities and autism and their families, concerted strategies to develop community based supports and a willingness to consider possibilities beyond those suggested by existing service provision.  We propose that family advocacy must be given the acknowledgement and prominence that it deserves. It is aligned with the familial, we-self of Eastern cultures and contemporary bioethical accounts of relational autonomy and vulnerability. It is premised on the ideals of mutual responsibility and respect and embraces the family in its widest sense, its community and natural environment. It strives to acknowledge the needs of the individual in the context of interdependent family and community.  It is clear that more perspectives are required than those of placing commissioners, clinicians and support workers.

If services were required to:

-          Demonstrate and document how their support of individuals with learning disabilities and autism is shaped by what it is learning from the person’s family

-          Demonstrate and document how it prioritises people’s links with their families and communities

-          Demonstrate and document how the interests and known skills of individuals with learning disabilities and autism are sustained.

Since such practices are consistent with the well-being of the entire family, new possibilities become possible.   Separately, it is possible to envisage some pioneer initiatives as an impetus to planning alternatives to default placements in Assessment and Treatment units. Salford has begun this process with no adults with learning disabilities and autism placed beyond its boundaries. Similarly, and since three deaths at Cawston Park Hospital, Norfolk has returned all adults who had been sent out of the area for the purposes of assessment and treatment.

We understand that it may take longer for clinicians to arrive at formulations concerning individuals with learning disabilities and autism. But to ensure that adults do not become administrative “orphans” stuck miles away from their families, it is crucial that their detention is subject to greater levels of scrutiny and challenge than that which has prevailed.   To this end we see merit in the following: 

Renewal of detention for people with autism and/or learning disabilities under s.20 ought to require a report from the placing commissioning body indicating (i) the steps being taken to secure the person’s return to the community (iii) the funding required and (iii) the services identified to enable the return. 

Periods of detention for people with autism and/or learning disabilities to be renewable at three months, six months, nine months and one year, with an expectation that detentions in excess of six months be considered exceptional.  At these milestone dates, a mental health tribunal review is indicated. Its members should have special accreditation and training in learning disabilities and autism to review cases relating to these populations.

We recommend a dedicated programme of training for judges hearing these cases. The histories of too many people placed in Assessment and Treatment units indicate that they were subject to the destructive dynamics of others. Judges must be attuned to the impacts of developmental harm in people’s early lives when they had neither the vocabulary or wherewithal to report the trauma of inadequate nourishment, sexual assaults and violence, for example. The medical member, we recommend, is a psychiatrist with expertise in supporting people with autism and/or learning disabilities (as appropriate) and that the specialist member has prior professional or lived experience of supporting a relative with autism and/or learning disabilities. 

Family members with whom the detained person ordinarily resides and/or has regular contact (unless the person objects) should be given the opportunity to submit a report to the tribunal indicating their views on continued detention and its impact on the person.

7 December 2022