Institute of Mental Health, University of Nottingham, 26-27 June 2018
This conference brought together legal professionals, researchers, mental health professionals, philosophers and ethicists and people with lived experience of mental distress (including many people with identities in more than one category).
Day one started with a plenary on the effects of austerity which focussed on human rights. Extensive commentary of the impact of massive cuts to multiple aspects of the welfare state (benefits, legal advice, education, social care, mental health services) on vulnerable groups, including those with psychosocial disabilities.
This was followed by an array of tempting parallel sessions. I attended one focussed on Mental Capacity.
Alex Ruck Keene (Barrister) and Camillia Kong (Philosopher) gave a preview of their forthcoming book on working with a practical ethical framework in Capacity Assessment under the Mental Capacity Act (MCA). They seek to persuade practitioners to reject a “thin” version of autonomy and instead recognise and engage with the importance of an individual’s full circumstances and relationships (including relationship with the assessor). They argue assessors have an ethical role and should focus on restoring/increasing capacity to promote an individual’s true autonomy.
Paul Hutton (Psychology researcher) spoke on supporting treatment decision making (focussing on those with psychosis but potentially with broader relevance). He noted the degree to which capacity assessors are actually influenced by the perceived wiseness of the patient’s decision and the degree to which the patient agrees with their diagnosis. Turning to supporting decision making, he identified important basic supports such as providing patients with simplified information and ensuring information is repeated. However, he also proposed that metacognitive training and training on information gathering prior to decision making may reduce impulsivity in decision making and increase decision making capacity.
Jim Rogers (Social work researcher) closed out the session with his research on the factors that influence judgements of capacity made by different groups of professionals, highlighting Mark Neary’s description of his son Steven’s latest capacity assessment by way of example. His research found that Best Interests Assessors (BIAs) rated ethics as an important consideration but this was much less true of other professional groups. Interestingly professionals recognised the influence of normative considerations (i.e. social and ethical norms around how the patient ‘ought to’ use or weigh information) but often did not reference the two-stage MCA test or the causative nexus at all (that the mental impairment must be the cause of the patient’s functional incapacity).
The afternoon drew to a close with a marathon plenary on the United Nations Convention of the Rights of Persons with Disabilities (UNCRPD). In lieu of a member of the UN Committee on the Rights of Persons with Disabilities (invited but sadly unable to attend), we were offered an impressive panel comprising members of both the UN and European Committees on the Prevention of Torture (Margret Osterfeld and Georg Hoyer respectively); a UN special rapporteur on the right to health (Dainius Puras), a member of the working group which developed General Comment 1 (Eilionoir Flynn), and a member of the National Survivor User Network with an extensive track record in the field of human rights and mental distress (Dorothy Gould). There was broad support amongst the panel and most of the audience for the UNCRPD goal of equal treatment before the law, but also realism in terms of the need to set intermediate goals seeking to reduce (prior to eliminating) the use of compulsion in the care and treatment of those with psychosocial disabilities and/or mental distress. Some the dilemmas around practical implementation of the UNCRPD were discussed, with particular reference to the background of austerity politics and reductions in services. Risks were identified around: restoring capacity/competence of mentally disordered offenders leading to them being held in prisons instead of hospitals and receiving even worse treatment; patients “rotting with their rights on” where the elimination of coercion was used to justify failures to provide services; that merely removing the impairment requirement from MH and MC law would not eliminate discrimination unless accompanied by the provision of alternatives to coercion (such as ‘crisis houses’ and other good quality, user-led community services). Nevertheless, many panel members (and some members of the audience) argued passionately that striving for the goal of disabled people being and remaining the architects of our own lives is vital to avoid inadvertently endorsing discrimination (by accepting lesser goals of “increasing” autonomy or rights). Whilst the importance of law as a foundation was recognised, it was also strongly argued that we must not wait for changes in the law before starting to change the practice. Good practice examples mentioned included: the Swedish Personal Ombudsman service; the Gateway peer support project; and the Voices project. A final note acknowledged the importance of looking at who is not in the room and making discussion accessible to all groups of service users (which would include less verbal autistics and those with intellectual disabilities).
Day two featured a succession of tough choices between parallel papers. In the first session I resorted to running between rooms in order to hear Mat Kinton (Mental Health Policy Adviser, CQC) propose ways forward from the difficulties created by the current legal position around Conditional Discharge, Community Treatment Orders (CTOs) and Deprivation of Liberty (DoL) as a result of the MM & PJ cases (Supreme Court appeal decisions awaited in both cases). Unsurprisingly anecdotal reports suggest that some professionals are resorting to reassessing individuals previously judged to have capacity to consent to DoL as lacking capacity, in order to access Conditional Discharge for them under DOLS arrangements. Unfortunately the proposed ways forward were not particularly palatable and included extending the Mental Health Act beyond hospitals to authorise deprivation in the community or the use of leave of absence rather than discharge powers (despite the conflict with the MHA Code of Practice on this). Jack Clayton-Thompson (Law researcher) spoke eloquently on capacity as a lifelong project and a vehicle for autonomy which recognises the role of wider social constraints (such as lack of service provision) in limiting autonomy. Referencing Rosie Harding’s research on supporting everyday decisions, he argued for the importance of supporting disabled young people and adults to learn from bad decisions and develop their decision-making capacity. Finally Paul Skowron (Law researcher) tackled the important but extremely difficult issue of the meaning of “best interpretation of will and preferences” (in General Comment 1). He argued that ‘best’ requires us to go beyond a search for the ‘true’ interpretation to acknowledge the process of interpretation and the role of the interpreter. Whilst acknowledging the danger inherent in this approach of producing clandestine ‘best interests’ decisions, he proposes the use of human rights to underpin an open process of interpreting will and preferences in which an interpreter is required to justify how they are interpreting/influencing the person’s will and preferences rather than claiming to know what the person wants better than the person does.
The following session kicked off with Lucy Series (Law researcher) considering how the purpose of the MCA came to be seen as empowerment. Tracing the development of the Act through the original Law Commission focus on issues of consent to medical treatment, the lack of powers for courts to resolve disputes, calls from LD charities for private law guardianship to empower family members and the lack of powers to intervene in situations of abuse and neglect, she highlighted the lack of any original focus on empowerment and instead recognised the MCA as a response to a “spectre of potential liability” for families and care givers acting without formal legal authority in relation to adults who lacked capacity to make their own decisions. This perception of a lacuna (gap in the law) led to the extension of law into areas of everyday life where it had not previously been – actually quite a paternalistic agenda. She identified a late stage in the development of the MCA that repurposed the proposed Act to an anti-infantilising agenda, but as a result of the originating purposes the final Act focussed on providing a shield against potential liability rather than addressing the political question of whether family or professionals should be the substitute decision maker.
Hope Davidson (Law researcher) continued the mental capacity law focus providing an analysis of the Assisted Decision-Making Capacity Act 2015 in Ireland and comparing it to the MCA. She highlighted some changes made late in the legislative process which appear to have shifted the Act away from full UNCRPD compliance and closer to the English MCA model. In particular, the addition of ‘in so far as is practicable’ to the requirement on a person intervening to “give effect, in so far as is practicable, to the past and present will and preferences of the relevant person, in so far as that will and those preferences are reasonably ascertainable” and the addition of “for the benefit of” to the requirement to “act at all times in good faith and for the benefit of the relevant person”. She argued that the overall effect of these changes is to temper and limit the degree to which a person intervening is required to “give effect” to the will and preferences of the adult and instead brings in an element similar to the concept of “best interests” in the English MCA – a construct specifically prohibited by the UNCRPD.
To round off the session we were treated to Peter Bartlett (Law researcher) on how far it might be possible to progress towards Supported Decision Making under the current MCA framework (given the remote prospect of imminent full UNCRPD implementation in England). He began with an analysis of the influence of the UNCRPD on Best Interests decision making in the Court of Protection: highlighting the Court’s engagement with P’s will and preferences, but also raising the caveats of the limited force of the UNCRPD in English law and the tendency in DOLS (rather than BI) cases to go against P’s expressed wishes and preferences. Also highlighted was the tendency for the views of family members to be perceived as biased without recognising that professionals and service providers also bring values to supporting an adult’s decision making and may have conflicts of interest.
The final parallel session considered the case law on capacity to consent to sexual activity (which essentially requires understanding of the mechanics of the act, pregnancy and STDs) and offered the critique that this is a medicalised view of sex which sidesteps the social dimension of sexual intimacy – particularly around consent. Importing a sociological perspective drawing on Nussbaum’s Capabilities approach, Jaime Lindsey and Rosie Harding (Sociolegal researchers) argued that the current approach focusses on the concerns of society around disabled adults engaging in sexual activity rather than those important to the individual and thus tends to justify restrictions rather than entitle adults to support to develop their capacity in this area.
This was followed by Rachel Clawson’s presentation of research from the My Marriage, My Choice project on the forced marriage of adults with Learning Disabilities. She highlighted widespread lack of awareness and understanding of the law on capacity to marry, with families, faith/community leaders, registrars and even some social care professionals often believing that families could make a decision to marry on behalf of a disabled adult.
The final plenary session of the conference focussed on reform of Mental Health law and featured Simon Wessely (Chair of the Independent Review into the Mental Health Act), who sadly was unable to stay for the full session. He set out the broad remit of the review including concerns about rising rates of coercion in mental health treatment, BME discrimination in mental health and the interfaces between the Mental Health Act and both the Criminal Justice System and the MCA. However he also highlighted the current lack of legislative time and money and expressed the view that legislative change alone has limited potential to fix problems. He went on to express the goal of the review in disappointingly limited terms as being to ‘improve the way people are treated and increase dignity and respect’ combined with ‘trying not to make things worse’. Members of the audience sought to engage him on a variety of issues. I raised the issue of the inclusion of Autism and Learning Disabilities in the current definition of mental disorder which he, summarily, dismissed as beyond the scope of the review (despite the statement in the Interim Report that this was “One of the key issues raised in our engagement to date” and the clear inclusion in the terms of reference of “any additional issues with the functioning of the act identified via consultation”). This is a fairly strong indication from the Chair that the review is not willing to address this issue at all.
Other members of the audience expressed concern that the issue of autonomy appears to be taking a backseat and that the review is very focussed on a beneficence view of concepts such as ‘dignity’. Simon Wessely was also tackled on the failure of the review to endorse binding Advance Directives. He justified this by arguing that, elsewhere in the world (such as Ontario), this has led to detention without treatment. Peter Bartlett responded that (as he is from Ontario) he disagreed and pointed out that focussing solely on occasional cases ignores the benefits of autonomy to the majority of patients.
Diana Rose (Professor of User-Led research, Institute of Psychiatry, King’s College London) spoke powerfully of the impact of coercive treatment combined with service cuts on the lives of Mental Health service users. She argued for a culture shift in mental health treatment, away from wards and coercion towards peer support, supported decision making and small safe places in the community, seeing the potential for this to be framed by legislative change.
Colin McKay (Chief Executive, Mental Welfare Commission for Scotland) spoke last and, unfortunately, after Simon Wessely had left. He engaged positively with the possibility of removing Autism and Learning Disability from the scope of Scottish Mental Health law, highlighting the Mental Welfare Commission’s concerns about the lack of progress on inappropriate detentions in Assessment and Treatment Units (ATUs). He outlined some of the key developments in Scottish Mental Health law including the separation of detention from compulsory treatment and the requirements of the Mental Health (Scotland) Act 2015 for ethically justifiable grounds for compulsion based on Significantly Impaired Decision Making Ability (a similar concept to capacity), benefit, risk and necessity, stronger advocacy provision and greater weight for advance decisions. However he also acknowledged that levels of compulsion in mental health care have not fallen in Scotland (although they are lower than England).