Implementing proposed reforms of the Mental Health Act for people with intellectual disability and autism: the perspective of multidisciplinary professionals in intellectual disability teams

© The Author(s), 2022. Published by Cambridge University Press on behalf of the Royal College of Psychiatrists. This is an Open Access article, distributed under the terms of the Creative Commons Attribution licence (http://creativecommons.org/licenses/by/4.0/).Background A recent government white paper sets out proposals for reforms to the Mental Health Act 1983 (MHA). Some of these proposals affect people with intellectual disabilities and/or autism. Aims To explore both positive and unintended negative effects of the proposed reforms by gathering the perspectives of healthcare workers from multiple disciplines, working with intellectual disability and/or autism in community and in-patient settings. Method A 14-question electronic questionnaire, comprising free-text, multiple choice and five-point Likert scale responses, was sent out via email between April and July 2021, to all multidisciplinary team professionals working in specialist intellectual disability community and in-patient teams in Hertfordshire Partnership University NHS Foundation Trust. Results There were 45 responders, of whom 53% worked in in-patient settings and 47% in out-patient teams. Respondents comprised healthcare professionals from multiple disciplines, 80% of which were non-medical. Most responders agreed with the general principles of the proposed reforms. However, 80% felt there would be potentially unintended consequences, and 76% thought that substantial investment in community services was required in advance of the proposed reforms. Conclusions The proposed MHA reforms may have unintended consequences for people with intellectual disabilities and/or autism. The findings of this study raised key concerns that need to be explored further and addressed before the MHA reforms are implemented. These include community provision, safeguards and use of the Mental Capacity Act, the potential for under or overdiagnosis of mental illness, and effects associated with the criminal justice system.Peer reviewe

Home visits: a reflection on family contact in a specialist forensic intellectual disability service

Purpose – There is little published literature about the number of home visits provided to patients within forensic intellectual disability units, and there is no published data on variables that affect home visits. There is a need for a baseline audit that can formulate standards for future practice. The paper aims to discuss these issues. Design/methodology/approach – This paper describes the home visit programme within a forensic intellectual disability service, and a baseline audit of the programme. The audit measured the number of home visits, any factors that adversely affect home visits, and the extent of family contact. The authors propose audit standards for evaluation of good practice in this area. Findings – The audit involved 63 patients over a one-year period. In total, 81 per cent of patients had some form of family contact and 54 per cent of patients at least one home visit. However, 19 per cent of patients had no contact with their family due to a variety of reasons. There were no significant differences in the number of home visits between men and women, patients on civil vs criminal sections or those treated “within area” or “out of area”. Patients in rehabilitation wards had significantly more visits than those in low or medium secure. Originality/value – Conventional wisdom is that reduced family contact is the direct result of patients being placed “out of area”. The results of this audit suggest that, at least in this group, the reasons may be much more nuanced and that the current definition of “out of area” has to be improved to incorporate the actual distance between the patient’s current family home and the service. Audit standards have been proposed to monitor family contact and home visits. Future work should focus on the relationship between family contact and treatment outcomes

“Why can’t they be in the community?” A policy and practice analysis of transforming care for offenders with intellectual disability

Purpose – The purpose of this paper is to describe key policy and practice issues regarding a significant subgroup of people with intellectual disability – those with offending behaviour being treated in forensic hospitals. Design/methodology/approach – The reasons why psychiatrists continue to be involved in the treatment of people with intellectual disability and mental health or behavioural problems and the factors that may lead to patients needing hospital admission are examined. Using two illustrative examples, three key questions – containment vs treatment, hospital care vs conditional discharge and hospital treatment vs using deprivation of liberty safeguards usage in the community are explored. Findings – Patients with intellectual disability, mental health problems and offending behaviours who are treated within forensic inpatient units tend to have long lengths of stay. The key variable that mediates this length of stay is the risk that they pose to themselves or others. Clinicians work within the framework of mental health law and have to be mindful that pragmatic solutions to hasten discharge into the community may not fall within the law. Originality/value – This paper makes practical suggestions for the future on how to best integrate hospital and community care for people with intellectual disability, mental health and offending behaviours. </jats:sec

Challenges and pitfalls of antipsychotic prescribing in people with learning disability

No abstract available

Long-stay patients with and without intellectual disability in forensic psychiatric settings: comparison of characteristics and needs

Background: In recent years, concerns have been raised that too many patients stay for too long in forensic psychiatric services and that this is a particular problem in those with an intellectual disability. Aims: To compare the characteristics, needs, and care pathways of long-stay patients with and without intellectual disability within forensic psychiatric hospital settings in England. Method: File reviews and questionnaires were completed for all long-stay patients in high secure and a representative sample of those in medium secure settings in England. Between-group analyses comparing patients with and without intellectual disability are reported. Results: Of the 401 long-stay patients, the intellectual disability and non-intellectual disability groups were strikingly similar on many sociodemographic, clinical and forensic variables. The intellectual disability group had significantly lower lengths of stay, fewer criminal sections, restriction orders and prison transfers, and higher levels of behavioural incidents and risk assessment scores. Conclusions: In spite of similar offence histories and higher risk levels, those with intellectual disability appear to be diverted away from the criminal justice system and have shorter lengths of stay. This has implications about the applicability of the Transforming Care programme to this group

Clozapine use in personality disorder and intellectual disability

Purpose: Clozapine is a well-known antipsychotic medication licensed for treatment-resistant schizophrenia, but there is limited research available to suggest its efficacy in the context of personality disorder and intellectual disabilities presenting with high-risk behaviour with or without psychotic symptoms. The purpose of this paper is to raise awareness of the benefits of using clozapine in patients with intellectual disabilities and personality disorder that present with a complex picture of serious risk of harm to both their life and the lives of others. Design/methodology/approach: The authors present five patients with intellectual disabilities and serious life-threatening challenging behaviour whom were started on clozapine as part of their multidisciplinary treatment plan to manage their presentation. The authors completed baseline assessment of five main symptom domains and then repeated this assessment following treatment with clozapine. Findings: In all five cases use of clozapine was objectively associated with an improvement in symptomatology, quality of life and a safe transfer to the community. Originality/value: The findings suggest that judicious use of clozapine could be considered as one of the effective pharmacological strategies in the management of patients with intellectual disabilities and personality disorder who present with serious life-threatening challenging behaviours

Priority concerns for people with intellectual and developmental disabilities during the COVID-19 pandemic

Background The approach taken to support individuals during the coronavirus disease 2019 (COVID-19) pandemic needs to take into account the requirements of people with intellectual disabilities and/or autism, who represent a major vulnerable group, with higher rates of co-occurring health conditions and a greater risk of dying prematurely. To date, little evidence on COVID-related concerns have been produced and no report has provided structured feedback from the point of view of people with intellectual disabilities and/or autism or of their family/carers. Aims To provide systemised evidence-based information of the priority concerns for people with intellectual disabilities and/or autism regarding the COVID-19 pandemic. Method Senior representatives of major UK-based professional and service-user representative organisations with a stake in the care of people with intellectual disabilities and/or autism were contacted to provide a list of concerns across three domains: ‘mental health and challenging behaviour’, ‘physical health and epilepsy’ and ‘social circumstances and support’. The feedback was developed into statements on frequently reported priorities. These statements were then rated independently by expert clinicians. A video-conference meeting to reconcile outliers and to generate a consensus statement list was held. Results Thirty-two organisations were contacted, of which 26 (81%) replied. From the respondent's data, 30 draft consensus statements were generated. Following expert clinician review, there was initially strong consensus for seven statements (23%), increasing to 27 statements (90%) following video conferencing. Conclusions These recommendations highlight the expectations of people with intellectual disabilities and/or autism in the current pandemic. This could support policymakers and professionals’ deliver and evidence person-centred care

Outcome Measures in intellectual disability: A Review and narrative synthesis of validated instruments.

BackgroundOutcome measurement is essential to determine the effectiveness of health interventions and improve the quality of services. The interplay of social, individual, and biological factors makes this a complex process in the psychiatry of people with intellectual disability (PwID).AimReview of outcome measures which are validated in PwID.MethodsA PRISMA-guided review was conducted, using a predefined criteria and a relevant word combination on four databases: EMBASE, Medline, CINAHL and PsycINFO. Each included study was examined for relevance to intellectual disability psychiatry. The psychometric data of each tool was critically assessed. Findings were narratively synthesised.ResultsOf 1,548 articles, 35 met the inclusion criteria. Several outcome measures were identified relevant to intellectual disability psychiatry, including tools for challenging/offending behavior, specific neurodevelopmental/clinical conditions such as ADHD, epilepsy, and dementia however, psychometric properties, validity and reliability varied considerably. The tools identified were largely clinician rated, with a dearth of measures suitable for completion by patients or their family carers.ConclusionMost outcome measures used for PwID lack suitable psychometric properties including validity or reliability for use within the ID population. Of importance, those with alternative expression or are non-verbal have been excluded from the research developing and reporting on measurement instruments. There is an underserved population who risk being left behind in the era of value-based medicine and increasing use of outcome measurement when assessing the effectiveness of healthcare interventions on individual and population levels. This is the first of its kind review in this area

Heterogeneity within Autism Spectrum Disorder in Forensic Mental Health: The Introduction of Typologies

Purpose: Individuals with diagnoses of Autism Spectrum Disorder (ASD) within criminal justice settings are a highly heterogeneous group. Although studies have examined differences between those with and without ASD in such settings, there has been no examination of differences within the ASD group. Design/methodology/approach: Drawing on the findings of a service evaluation project, this paper introduces a typology of ASD within forensic mental health and learning disability settings. Findings: The eight sub-types that are described draw on clinical variables including psychopathy, psychosis and intensity/ frequency of problem behaviours that co-occur with the ASD. The initial assessment of inter rater reliability on the current version of the typology revealed excellent agreement, multirater Kfree = .90. Practical implications: The proposed typology could improve understanding of the relationship between ASD and forensic risk, identify the most appropriate interventions and provide prognostic information about length of stay. Further research to refine and validate the typology is ongoing. Originality/value: This paper introduces a novel, typology based approach which aims to better serve people with ASD within criminal justice settings