The potential unintended consequences of Mental Health Act reforms in England and Wales on people with intellectual disability and/or autism.

The draft Mental Health Bill, which amends the Mental Health Act 1983 for England and Wales, proposes protections for people with intellectual disability and/or autism (ID/A) to prevent detention in hospital in the absence of mental illness. This editorial critically appraises the positive impact and unintended consequences of the proposed reforms for people with ID/A.

Psychiatric inpatient admissions and discharges of people with intellectual disabilities: A time series analysis of English national data.

BACKGROUND: We examined whether a series of variables were related to the number of psychiatric inpatients using publicly available data about English psychiatric bed utilisation and NHS workforce. METHOD: Using linear regression, with auto-regressive errors, we examined relationships between variables over time using data from December 2013 to March 2021. RESULTS: Over time, the number of inpatients reduced by either 6.58 or 8.07 per month depending upon the dataset utilised, and the number of community nurses and community nursing support staff reduced by 7.43 and 2.14 nurses per month, respectively. Increasing numbers of consultant psychiatrists were associated with fewer inpatients over time. More care and treatment reviews (CTRs) were associated with more admissions over time, while more post-admission CTRs were associated with increased discharges over time. CONCLUSIONS: Future studies should examine whether psychiatric bed utilisation elsewhere within the NHS by people with intellectual disabilities has increased.

Psychiatry and neurodevelopmental disorders: experts by experience, clinical care and research.

People with neurodevelopmental disorders often present with challenging behaviours and psychiatric illnesses. Diagnosis and treatment require patients, families and healthcare professionals to work closely together in partnership, acknowledging their respective areas of expertise. Good treatment outcomes should also be underpinned by robust research evidence. Key research priorities are highlighted.

The Prevalence of Diabetes in Autistic Persons: A Systematic Review.

BACKGROUND: It has been proposed that autistic individuals are at an increased risk of type 1 and type 2 diabetes. Improved understanding of diabetes prevalence in autistic persons will help inform resource allocation for diabetes-related public health measures for this patient group. OBJECTIVE: To conduct a systematic review of published literature pertaining to type 1 and type 2 diabetes prevalence in autistic individuals, including comparison with their non-autistic peers. METHODS: Eligibility criteria included studies investigating the prevalence of diabetes in autistic individuals, as well as having been published in the English language. A systematic search of online databases (MEDLINE, PsycINFO, CINAHL, EMBASE and PubMed) was conducted on 4th April 2020. Additional approaches included the ancestry method, grey literature searches and expert consultation. Studies were qualitatively analysed with reporting quality appraised. RESULTS: 19 eligible studies were identified, 7 of which provided type-specific diabetes prevalence data. Of 15 studies that included a non-autistic control group, 9 reported a higher diabetes prevalence among autistic persons, with a statistically significant difference in 4 studies. Studies demonstrating a higher diabetes prevalence in autistic groups had higher average study population sizes and reporting quality ratings. CONCLUSION: It is uncertain whether diabetes is significantly more prevalent in autistic persons relative to their non-autistic peers, though larger studies suggest a trend in this direction. Nevertheless, diabetes is a significant public health issue for the autistic community, which may require a tailored approach for identification and management. Prospero database registration number: CRD42019122176.

A structured programme to withdraw antipsychotics among adults with intellectual disabilities: The Cornwall experience.

BACKGROUND: Antipsychotic medications are used among 19%-58% of adults with intellectual disabilities to manage challenging behaviour against the NICE guideline recommendations. Studies show that it is possible to completely withdraw antipsychotics in about one third of adults with intellectual disabilities and a dose reduction of 50% or more in another third. METHOD: In Cornwall, over three years the present authors developed a structured pathway to withdraw antipsychotics among adults with intellectual disabilities which involved people with intellectual disabilities and their carers, GPs, community learning disability team members and pharmacists. RESULTS: The present authors managed to withdraw antipsychotics totally among 46.5% (33/71) and reduced over 50% of dosage in another 11.3% (8/71) of adults with intellectual disabilities. At three months follow-up no one required hospital admission or change in placement. CONCLUSION: It is possible to withdraw/reduce antipsychotics in a high proportion of adults with intellectual disabilities if a concerted effort is made involving all stakeholders from the outset.

The Prevalence of Autism Spectrum Disorders in Adult Psychiatric Inpatients: A Systematic Review.

BACKGROUND: Whilst the prevalence of autism spectrum disorders in adults within the community setting is well-established, less is known about the prevalence among adults based within a psychiatric inpatient setting. OBJECTIVE: To conduct a systematic literature review pertaining to the prevalence of autism spectrum disorders among the adult psychiatric inpatient population. METHOD: Eligibility criteria included: (a) investigation of the prevalence of autism spectrum disorders (b) adult psychiatric inpatient study population (c) published in English language. Electronic databases accessed included PubMed, Medline, CINAHL, PsycINFO and EMBASE. Additionally, the ancestry method was utilised for the references of eligible papers, as well as grey literature searches and consultation with experts in the field. RESULTS: From the search, 4 studies were identified which satisfied the inclusion criteria, conducted in a variety of inpatient psychiatric settings, including secure forensic and intellectual disability units and a state psychiatric hospital. There were significant differences in methodological approaches, including the screening tests, diagnostic instruments and diagnostic criteria utilised. Autism spectrum disorder prevalence estimates varied considerably, from 2.4-9.9%. CONCLUSION: From the limited research data currently available, it appears that the prevalence of autism spectrum disorders is increased in inpatient psychiatric settings relative to the general population. There is a need for further high quality research in this patient group, to add to this limited evidence base, as well as in developing effective strategies to identify patients with a high likelihood of autism spectrum disorders within this setting.

Vitamin D deficiency in an inpatient forensic intellectual disability service.

No research has examined vitamin D deficiency among inpatients within forensic intellectual disability services, despite their potentially increased risk. Tests of serum 25(OHD) concentration in blood are routinely offered to patients within the service as part of the admission and annual physical health check. Results were classified as deficient <25, insufficient <50, sufficient 50-75 or optimal >75. Deficient or insufficient patients were offered supplement treatment and retested within 6 months. Levels were compared between groups: level of security and gender. At baseline, 87% of patients were deficient or insufficient, whilst 13% were sufficient or optimal. At follow-up, 53% had sufficient or optimal levels. However, some patients remained deficient (13%) or insufficient (34%) due to non-compliance with treatment. Women appeared more likely to be deficient. High levels of vitamin D deficiency were found among this population. Vitamin D screening and treatment is a simple and effective way of improving the physical health of this population.

The clinical, forensic and treatment outcome factors of patients with autism spectrum disorder treated in a forensic intellectual disability service.

BACKGROUND: To describe the characteristics of those with autism spectrum disorder (ASD) treated within a forensic intellectual disability hospital and to compare them with those without ASD. METHOD: Service evaluation of a cohort of 138 patients treated over a 6-year period. RESULTS: Of the 138, 42 had an ASD. Personality disorders and harmful use or dependence on drugs were significantly lower in the ASD group. The ASD group was less likely to be subject to criminal sections or restriction orders. Self-harm was significantly higher in the ASD group. There were no differences in the length of stay and direction of care pathway. CONCLUSIONS: Although the ASD and non-ASD groups differ on clinical and forensic characteristics, their treatment outcomes appear similar. This suggests that the diagnostic category of ASD alone may be inadequate in predicting the treatment outcome. There is a case to identify distinct typologies within the ASD group.

Impact of care pathway-based approach on outcomes in a specialist intellectual disability inpatient unit.

Specialist intellectual disability inpatient units have come under increased scrutiny, leading to questions about the quality of service provision in this sector. A care pathway-based approach was implemented in such a unit and its impact on outcome variables was measured. The care pathway-based approach resulted in the turnover of more patients, increased capacity for admissions to the unit, reduced lengths of stay in hospital, timely assessments and treatments, which resulted in better outcomes in patients. Care pathway-based approach to service provision provides not only better outcomes in patients but also a reliable way of ensuring true multi-agency working and accountability. If used widely, it can reduce the variability in the quality of current service provision.

Telepsychiatry for people with intellectual disabilities and mental health difficulties during Covid-19 pandemic: survey of self-reported experience and acceptability to patients, carers and psychiatrists in the UK.

Aim: This project sought to ascertain views and experiences of people with intellectual disabilities, their carers', and specialist intellectual disability psychiatrists as to use of telepsychiatry consultations. Background: During the Covid-19 pandemic specialist psychiatrists in intellectual disability services in the United Kingdom (UK) have explored and adopted use of telepsychiatry for psychiatric consultations. Method: An easy-read co-designed questionnaire was sent to potential respondents N = 590 potential respondents (N = 280 patients, N = 280 carers), and a separate questionnaire was sent electronically to N = 30 specialist intellectual disability psychiatrists. Findings: Responses were received from N = 192 respondents (N = 68 (24%) patients, N = 98 (35%) carers, and N = 26 (90%)) psychiatrists. Advantages of telepsychiatry cited were flexibility, and it being less disruptive to patients' routines, offering convenient practice and saving travel time and cost. Disadvantages reported included loss of rapport and relationship with patients, and an inability to conduct an effective mental state examination. Conclusion: This survey has produced equivocal evidence as to acceptability of telepsychiatry for all people with intellectual disabilities, carers and psychiatrists cannot be assumed. Some patients may need significant support to enable them to engage with such an approach.

Sertraline for anxiety in adults with a diagnosis of autism (STRATA): study protocol for a pragmatic, multicentre, double-blind, placebo-controlled randomised controlled trial.

BACKGROUND: Selective serotonin reuptake inhibitors (SSRIs) are commonly prescribed to manage anxiety in adults with an autism diagnosis. However, their effectiveness and adverse effect profile in the autistic population are not well known. This trial aims to determine the effectiveness and cost-effectiveness of the SSRI sertraline in reducing symptoms of anxiety and improving quality of life in adults with a diagnosis of autism compared with placebo and to quantify any adverse effects. METHODS: STRATA is a two-parallel group, multi-centre, pragmatic, double-blind, randomised placebo-controlled trial with allocation at the level of the individual. It will be delivered through recruiting sites with autism services in 4 regional centres in the United Kingdom (UK) and 1 in Australia. Adults with an autism diagnosis and a Generalised Anxiety Disorder Assessment (GAD-7) score ≥ 10 at screening will be randomised 1:1 to either 25 mg sertraline or placebo, with subsequent flexible dose titration up to 200 mg. The primary outcome is GAD-7 scores at 16 weeks post-randomisation. Secondary outcomes include adverse effects, proportionate change in GAD-7 scores including 50% reduction, social anxiety, obsessive-compulsive symptoms, panic attacks, repetitive behaviours, meltdowns, depressive symptoms, composite depression and anxiety, functioning and disability and quality of life. Carer burden will be assessed in a linked carer sub-study. Outcome data will be collected using online/paper methods via video call, face-to-face or telephone according to participant preference at 16, 24 and 52 weeks post-randomisation, with brief safety checks and data collection at 1-2, 4, 8, 12 and 36 weeks. An economic evaluation to study the cost-effectiveness of sertraline vs placebo and a QuinteT Recruitment Intervention (QRI) to optimise recruitment and informed consent are embedded within the trial. Qualitative interviews at various times during the study will explore experiences of participating and taking the trial medication. DISCUSSION: Results from this study should help autistic adults and their clinicians make evidence-based decisions on the use of sertraline for managing anxiety in this population. TRIAL REGISTRATION: ISRCTN, ISRCTN15984604 . Registered on 08 February 2021. EudraCT 2019-004312-66. ANZCTR ACTRN12621000801819. Registered on 07 April 2021.

Predicting institutional violence in offenders with intellectual disabilities: the predictive efficacy of the VRAG and the HCR-20.

BACKGROUND: There is a developing evidence base to support the use of risk assessment instruments in offenders with intellectual disability (ID). The aim of this study was to try to develop this literature with the inclusion of a control group of mentally disordered offenders without an ID, using the HCR-20 and VRAG. MATERIALS AND METHODS: The VRAG and the HCR-20 were completed for a group of offenders with an ID (n = 25) and a control group (n = 45), in four medium-secure units across the UK. The outcome measure was physical aggression measured over 6 months. RESULTS: Both instruments consistently produced large effect sizes predicting any physical aggression and severe physical aggression. The structured clinical judgement based on the HCR-20 was especially good. CONCLUSIONS: The HCR-20 and the VRAG have excellent predictive efficacy in offenders with an ID. A structured clinical judgement based on the HCR-20 was especially predictive.

The psychological and social impact of the digital self-support system 'Brain in Hand' on autistic people: prospective cohort study in England and Wales.

BACKGROUND: Brain in Hand (BIH) is a UK-based digital self-support system for managing anxiety and social functioning. AIMS: To identify the impact of BIH on the psychological and social functioning of adults with autism. METHOD: Adults with diagnosed or suspected DSM-5 (level 1) autism, identified by seven NHS autism services in England and Wales, were recruited for a 12-week prospective mixed-methods cohort study. The primary quantitative outcome measures were the Health of the Nation Outcome Scales for People with Learning Disabilities (HONOS-LD) and the Hospital Anxiety and Depression Scale (HADS). Fisher's exact test explored sociodemographic associations. Paired t-test was utilised for pre-post analysis of overall effectiveness of BIH. Multivariable linear regression models, univariable pre-post analysis, Wilcoxon signed-rank test, logistic regression analysis, Bonferroni correction and normative analysis were used to give confidence in changes identified. A thematic analysis of semi-structured exist interviews following Braun and Clarke's six-step process of 10% of participants who completed the study was undertaken. RESULTS: Sixty-six of 99 participants completed the study. There was significant reduction in mean HONOS-LD scores, with 0.65 s.d. decrease in those who used BIH for 12 weeks. Significant positive changes were identified in HONOS-LD subdomains of 'self-injurious behaviours', 'memory and orientation', 'communication problems in understanding', 'occupation and activities' and 'problems with relationship'. A significant reduction in the anxiety, but not depression, component of the HADS scores was identified. Thematic analysis showed high confidence in BIH. CONCLUSIONS: BIH improved anxiety and other clinical, social and functioning outcomes of adults with autism.

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

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.

A systematic review of in-patient psychiatric care for people with intellectual disabilities and/or autism: effectiveness, patient safety and experience.

BACKGROUND: An increasing number of children, adolescents and adults with intellectual disabilities and/or autism are being admitted to general psychiatric wards and cared for by general psychiatrists. AIMS: The aim of this systematic review was to consider the likely effectiveness of in-patient treatment for this population, and compare and contrast differing models of in-patient care. METHOD: A systematic search was completed to identify papers where authors had reported data about the effectiveness of in-patient admissions with reference to one of three domains: treatment effect (e.g. length of stay, clinical outcome, readmission), patient safety (e.g. restrictive practices) and patient experience (e.g. patient or family satisfaction). Where possible, outcomes associated with admission were considered further within the context of differing models of in-patient care (e.g. specialist in-patient services versus general mental health in-patient services). RESULTS: A total of 106 studies were included and there was evidence that improvements in mental health, social functioning, behaviour and forensic risk were associated with in-patient admission. There were two main models of in-patient psychiatric care described within the literature: admission to a specialist intellectual disability or general mental health in-patient service. Patients admitted to specialist intellectual disability in-patient services had greater complexity, but there were additional benefits, including fewer out-of-area discharges and lower seclusion rates. CONCLUSIONS: There was evidence that admission to in-patient services was associated with improvements in mental health for this population. There was some evidence indicating better outcomes for those admitted to specialist services.

The role of mindfulness training in sustaining weight reduction: retrospective cohort analysis.

BACKGROUND: Psychological stress has an established bi-directional relationship with obesity. Mindfulness techniques reduce stress and improve eating behaviours, but their long-term impact remains untested. CALMPOD (Compassionate Approach to Living Mindfully for Prevention of Disease) is a psychoeducational mindfulness-based course evidenced to improve eating patterns across a 6-month period, possibly by reducing stress. However, no long-term evaluation of impact exists. AIMS: This study retrospectively evaluates 2-year outcomes of CALMPOD on patient engagement, weight and metabolic markers. METHOD: All adults with a body mass index >35 kg/m2 attending an UK obesity service during 2016-2020 were offered CALMPOD. Those who refused CALMPOD were offered standard lifestyle advice. Routine clinic data over 2 years, including age, gender, 6-monthly appointment attendance, weight, haemoglobin A1C and total cholesterol, were pooled and analysed to evaluate CALMPOD. RESULTS: Of 289 patients, 163 participated in the CALMPOD course and 126 did not. No baseline demographic differences existed between the participating and non-participating groups. The CALMPOD group had improved attendance across all 6-monthly appointments compared with the non-CALMPOD group (P < 0.05). Mean body weight reduction at 2 years was 5.6 kg (s.d. 11.2, P < 0.001) for the CALMPOD group compared with 3.9 kg (s.d. 10.5, P < 0.001) for the non-CALMPOD group. No differences in haemoglobin A1C and fasting serum total cholesterol were identified between the groups. CONCLUSIONS: The retrospective evaluation of CALMPOD suggests potential for mindfulness and compassion-based group educational techniques to improve longer-term patient and clinical outcomes. Prospective large-scale studies are needed to evaluate the impact of stress on obesity and the true impact of CALMPOD.

Attention-deficit hyperactivity disorder in people with intellectual disability: statistical approach to developing a bespoke screening tool.

BACKGROUND: Attention-deficit hyperactivity disorder (ADHD) is common among people with intellectual disability. Diagnosing ADHD in this clinically and cognitively complex and diverse group is difficult, given the overlapping psychiatric and behavioural presentations. Underdiagnoses and misdiagnoses leading to irrational polypharmacy and worse health and social outcomes are common. Diagnostic interviews exist, but are cumbersome and not in regular clinical use. AIMS: We aimed to develop a screening tool to help identify people with intellectual disability and ADHD. METHOD: A prospective cross-sectional study, using STROBE guidance, invited all carers of people with intellectual disability aged 18-50 years open to the review of the psychiatric team in a single UK intellectual disability service (catchment population: 150 000). A ten-item questionnaire based on the DSM-V ADHD criteria was circulated. All respondents' baseline clinical characteristics were recorded, and the DIVA-5-ID was administered blinded to the individual questionnaire result. Fisher exact and multiple logistic regressions were conducted to identify relevant questionnaire items and the combinations that afforded best sensitivity and specificity for predicting ADHD. RESULTS: Of 78 people invited, 39 responded (26 men, 13 women), of whom 30 had moderate-to-profound intellectual disability and 38 had associated comorbidities and on were medication, including 22 on psychotropics. Thirty-six screened positive for ADHD, and 24 were diagnosed (16 men, eight women). Analysis showed two positive responses on three specific questions to have 88% sensitivity and 87% specificity, and be the best predictor of ADHD. CONCLUSIONS: The three-question screening is an important development for identifying ADHD in people with intellectual disability. It needs larger-scale replication to generate generalisable results.

Personality disorders in offenders with intellectual disability: a comparison of clinical, forensic and outcome variables and implications for service provision.

AIM: To establish any differences between patients with and without a diagnosis of personality disorders, being treated in a secure inpatient service for offenders with intellectual disability (ID) in the UK. METHOD: A cohort study involving a selected population of people with ID and offending behaviours. Results The study included a total of 138 patients, treated over a 6 year period - 77 with a dissocial or emotionally unstable personality disorder and 61 without. Women were more likely to be in the personality disorder group. Both groups had high prevalence of abuse with no significant differences. Depressive disorders and substance abuse were more common in the personality disorder group, while epilepsy and autistic spectrum disorders were more common in the non-personality disorder group. Rather than differences, what was more striking was the rate and range of these comorbidities across both groups. Although past histories of violence and institutional aggression were no different, compulsory detention under criminal sections and restriction orders were more common in the personality disorder group. There were no differences in treatment outcomes. CONCLUSIONS: Although about half of patients detained in secure units for offenders with ID have a personality disorder, there were more similarities than differences between this group and the rest. While good treatment outcomes supported the case for specialised secure treatment units for people with ID, the case for establishing a more specialised ID-personality disorder unit was less convincing. There is also a need to explore whether there are alternative diagnostic models that can delineate better the group with personality difficulties in this population.

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.

The face validity of an initial sub-typology of people with autism spectrum disorders detained in psychiatric hospitals.

LAY ABSTRACT: Autistic adults who have a history of committing crimes pose challenges for the criminal justice system in terms of disposal and treatment. For this reason, we investigated the validity of a proposed sub-typology of autistic adults detained in secure psychiatric hospitals. Initially, we ran a focus group with psychiatrists, clinical psychologists, healthcare workers, family members and autistic adults who had been detained in hospital to consider a sub-typology of autistic adults who may come into contact with secure psychiatric hospitals. We asked 15 psychiatrists and clinical psychologists to rate 10 clinical vignettes based on our sub-typology with three rounds; revisions to the vignettes to improve clarity were made following each round. The findings indicated that these subtypes possess face validity and raters were able to classify all 10 clinical case vignettes into the sub-typology and percentage of agreement ranged from 96% to 100% for overall subtype classification. The findings suggested that the further validity of the sub-typology should be investigated within a larger study using a clinical sample. These subtypes may help inform treatment and care pathways within hospital.