Journal Articles

Introduction: Care (Education) and Treatment Reviews (C(E)TR) are meetings to review individualized needs of people with intellectual disabilities (PwID) at risk of or currently undergoing psychiatric hospitalization. We aimed to understand C(E)TR impact and effectiveness from professionals working with PwID.

Methods: An online mixed-methodology survey which included 34 questions (either Likert or free text) was shared with networks including relevant professionals. Quantitative data are presented descriptively. Thematic analysis was conducted on free-text responses.

Results: Of 66 people representing multiple intellectual disability teams across the UK, 67% found the C(E)TR process useful, 35% felt C(E)TRs made a difference to their clinical care, while 36% felt it did not. Thematic analysis showed four overarching themesj: processes and structures, recommendations, accountability, and statutory vs. advisory. Word missing after advisory?

Conclusion: Clinicians find C(E)TRs useful for their practice but remain concerned about significant clinical risks and service issues beyond their control which C(E)TRs fail to identify.

The Mental Health Bill, 2025, proposes to remove autism and learning disability from the scope of Section 3 of the Mental Health Act, 1983 (MHA). The present article represents a professional and carer consensus statement that raises concerns and identifies probable unintended consequences if this proposal becomes law. Our concerns relate to the lack of clear mandate for such proposals, conceptual inconsistency when considering other conditions that might give rise to a need for detention and the inconsistency in applying such changes to Part II of the MHA but not Part III. If the proposed changes become law, we anticipate that detentions would instead occur under the less safeguarded Deprivation of Liberty Safeguards framework, and that unmanaged risks will eventuate in behavioural consequences that will lead to more autistic people or those with a learning disability being sent to prison. Additionally, there is a concern that the proposed definitional breadth of autism and learning disability gives rise to a risk that people with other conditions may unintentionally be unable to be detained. We strongly urge the UK Parliament to amend this portion of the Bill prior to it becoming law.

Tharian, R., Hicks, M., Sahadevan, S., Patteril, E., Chester, V., Alexander, R., & Shankar, R. (2025). Anticholinergic Burden in People with Intellectual Disability in Psychiatric Inpatient Units: Practice and Audit Recommendations. Journal of Mental Health Research in Intellectual Disabilities, 1–13. https://doi.org/10.1080/19315864.2025.2507640

ABSTRACT
Introduction
Anticholinergic burden (ACB) is the cumulative effect of taking multiple medications with anticholinergic properties. ACB is associated with polypharmacy, increased comorbidity, and premature mortality in people with intellectual disability (PwID). No clinical standards for ACB monitoring specific to PwID exist, particularly in psychiatric inpatient units where the risk of ACB is highest.
Method
We used the ACB Calculator and Anticholinergic Effect on Cognition (AEC) scale to compute ACB scores in two English psychiatric units. We administered the Liverpool University Side Effect Rating Scale (LUNSERS) and Glasgow Antipsychotic Side Effect Scale (GASS) to examine patients’ perception of side-effects.
Results
Of 19 patients, the ACB Calculator mean was 6.68 and AEC 4.21. The LUNSERS mean was 22.72 (low side-effects) and GASS 9.12 (absent/mild side-effects). Two prescriber groups and two multidisciplinary sessions discussed the findings.
Conclusions
Based on our findings, practice/audit recommendations to minimize ACB for PwID in psychiatric inpatients are suggested.

The Psychopathy Checklist Short Version (PCL:SV) is a brief measure of psychopathy. This study aimed to assess the reliability and validity of the PCL:SV with autistic adults detained in inpatient psychiatric care. Data were collected from 282 autistic adults at two time points separated by 12-months. Reliability and validity were investigated using omega, regression, receiver operating characteristic curves, and correlational analysis. PCL:SV Total, Factor 1, and Factor 2 had satisfactory to high reliability and construct validity. Higher PCL:SV scores were associated with poorer treatment progress, a longer length of stay, and previous criminal offending. Factor 1 was associated with a forensic history, detention under Part III of the Mental Health Act, and a personality disorder diagnosis, while Factor 2 was also associated with the absence of a forensic history, detention under Part II of the Mental Health Act, but not a personality disorder diagnosis. It was thought that Factor 2 most likely captured data associated with autism and/or intellectual disabilities (e.g., behaviors that challenge). Those with intellectual disabilities were less likely to have convictions, a history of violent offending, or a forensic history. They were also more likely to be detained under Part II of the Mental Health Act, and were more likely to have had a positive transfer 12-months later to a ward with lesser security. The PCL-SV correlated as expected with the HCR-20 and the START. This study provides preliminary evidence to support the use of the PCL:SV with autistic adults, including those with intellectual disabilities, within inpatient psychiatric hospitals.

People with intellectual disabilities (IDs) typically present with co-occurring communication difficulties. Research indicates that cognitive-linguistic impairment is predictive of poor health literacy, which can preclude individuals from developing a comprehensive understanding of their health, care and treatment needs. People accessing forensic intellectual and developmental disability (FIDD) services are more likely to engage meaningfully in treatment and rehabilitation only if they feel empowered to play active roles in their own care. Delivering proposed treatment programmes in an accessible format, which meets their language needs, is likely to promote this. This paper aims to describe the development and evaluation of an easy read version of the “Ten point treatment programme” within an inpatient FIDD service. An expert panel comprising speech and language therapists and education professionals utilised a quality improvement method to develop this. Patients and staff evaluated this resource and gave feedback through surveys or meetings. The resource was refined based on responses, and a final version produced.
The easy-read Ten-Point Treatment programme resource was considered valuable by patients and staff from this service. Provision of an easy-read version of the Ten-Point Treatment Programme may support individuals with communication difficulties to understand health and care information relevant to their inpatient admission and may empower them to take more active roles in their treatment pathway. It is important to acknowledge, however, that easy read is not an accessible means of information provision for all individuals with ID and that the empirical evidence for its impact is limited. This is the first published attempt to evaluate the acceptability of an easy-read version of the Ten-Point Treatment Programme within an inpatient FIDD service in the UK.

Abstract
Purpose
Government policy in the UK is emphasising a shift from inpatient to community-based management of those with intellectual disabilities and forensic needs. However, community services can be reluctant to accept patients deemed ready for discharge by inpatient forensic teams, and this leading to delayed discharges. An evidence-based discharge communication tool based on a comprehensive needs assessment is therefore required for patients with intellectual disabilities and forensic needs.
Design/methodology/approach
The purpose of this paper is to describe the development and implementation of the What I Need (WIN) plan in a Community Forensic Intellectual Disability Team. The WIN plan aims to create an effective discharge communication tool through carrying out a needs assessment based on the Camberwell Assessment of Need – Forensic Version (CANFOR).
Findings
The team and its stakeholders have observed several benefits following implementation of the WIN plan. The WIN is patient led and generates constructive dialogue around needs, risks and strengths between the patient, their family/carers and staff/clinicians. It is multidisciplinary, efficient to complete and collates information on individual patients’ current and historical forensic risks and needs in one document.
Originality/value
While delays in discharging in this population have been extensively studied, communication tools to support the process of discharge have received less focus. This paper describes the development and implementation of a discharge communication tool that incorporates risk management strategies for patients with intellectual disabilities and forensic needs.

In November 2023, the Department of Health and Social Care published guidance, entitled ‘Baroness Hollins’ Final Report: My Heart Breaks – Solitary Confinement in Hospital Has no Therapeutic Benefit for People with a Learning Disability and Autistic People’. The report’s commendable analysis of the problems and identification of the areas where practice should be improved is unfortunately not matched by many of its recommendations, which appear to be contrary to evidence-based approaches. The concerns are wide-ranging, from the use of the term ‘solitary confinement’ for current long-term segregation (LTS) and seclusion, to presumption that all LTS and seclusion is bad, to holding clinicians (mainly psychiatrists) responsible for events beyond their locus of control. Importantly, there is a no guidance on how to practically deliver the recommendations in an evidence-based manner. This Feature critically appraises the report, to provide a comprehensive summary outlining potential positive impacts, identifying specific concerns and reflecting on best practice going forward.

Introduction

Hypothyroidism is a chronic health condition which causes physical, cognitive and psychiatric symptoms. The prevalence of hypothyroidism in adults with intellectual disabilities is under researched.

Method

Hypothyroidism was examined among 463 patients within an outpatient intellectual disability psychiatric team. Clinic records were utilised for this study, including sociodemographic, psychiatric and physical health diagnoses.

Results

Among the 463 patients, 43 (9%) had hypothyroidism. Compared to those without hypothyroidism, the hypothyroid group were significantly older, more likely to be female, and had increased rates of high cholesterol, diabetes, Down’s Syndrome and dementia.

Discussion

Rates of hypothyroidism within this cohort of patients with intellectual disabilities were high (9%). The results suggest hypothyroidism in intellectual disability should be the focus of prospective research, in larger, more representative samples. This study indicates a need for increased awareness of, and resources for hypothyroidism in health services.

Background
Outcome 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).
Aim
Review of outcome measures which are validated in PwID
Methods
A 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.
Results
Of 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.
Conclusion
Most 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.

He spent his entire consultant career in the NHS working in Norfolk, participating in, and driving many changes in the field of learning disability over the past 30 years. Passionately committed, he was a diligent and meticulous clinician who had an endearingly old fashioned ability to speak truth to power, however unpalatable that truth was.

Selective serotonin reuptake inhibitors 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. 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 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. This primary and a range of secondary 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. 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.

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.

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.

Abstract
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.

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.

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.

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 dis- ability 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 conse- quences 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.

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.

Irrespective of geographical, cultural, and socio-economic variations, about 1–2% of the general population have an intellectual disability (ID). Although diagnostic labels of and societal outlook towards this group have changed over time, there are enduring challenges about how they are integrated into mainstream society. While the Western world today focuses on this social integration, low- and middle-income countries face more fundamental issues ranging from diagnostic recognition to the provision of the very basic of support around health and social care. People with ID have not only a high prevalence of physical and mental health problems but also a high rate of preventable deaths. Some of the key reasons for this are discussed in this chapter, along with potential ways of addressing this inequity. Given the shortage of specialist expertise and difficulties in accessing basic resources in some parts of the world, the approaches that have been successful have relied on empowering parents, up-skilling staff working in non-government organizations, and using community support workers. The primary focus of these initiatives is to deliver a model of care that is accessible to the community where people with ID live.

Recently a three-session intervention using mindfulness (The compassionate approach to living mindfully for prevention of disease- CALMPOD) was found beneficial in a tertiary obesity service. Our aim was to assess the suitability of this intervention in mental illnesses and/or intellectual disability services. Three pre-pilot focus group discussions involving professionals and service-users were held to identify key aspects of the CALMPOD programme for adaption. Based on this, CALMPOD was modified and then piloted in among 17 in-patients in a forensic ID unit. The mean BMI was 34.76%, 76% were obese, 6% were over-weight and 18% in the normal range of weight. Only 3 patients attended the three-session programme (17%). All 3 were in the obese category, all had had individual weight management input – i.e. seen by dietician, weight management included in care plans. A post-pilot focus group, held after completion of the pilot to discuss lessons learned identified 6 key themes. (i) Patients and staff recognise that the programme was ‘necessary’ and ‘useful’, but the challenge is how to ‘start attending regularly’. Once in, participants ‘tended to stay on’. (ii) A visible publicity campaign is needed to spread awareness of the programme and its ‘newness’. This would help with staff ‘buy in’ from all wards and departments. (iii) The key message should be ‘living healthily’ and ‘feeling better’, not just weight loss. (iv) Staff and/or patients’ family members participating in the programme would be more motivating. (v) The content of the programme needs further modifying with an emphasis on shared activities, calories counting and less emphasis on definitions. (vi)Calorie counts and exercise trackers need ‘more fun and interactive elements. Based on these recommendations a revised CALMPOD- ID programme, co-produced with service users, is now being introduced in the service.

This review aims to systematically identify and synthesise studies that investigate autism prevalence within criminal justice system (CJS) cohorts, and CJS involvement in autistic cohorts. The search yielded 6491 articles. 34 qualified for inclusion. Prevalence rates of autism in the CJS varied from 1–60% (an over representation in comparison to the general population) and that of CJS involvement in autistic populations from 3–48%, ( al lower or equivalent level to the general population). Factors causing over representation of autism within CJS cohorts are discussed.

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.

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.

The patient is indeed the expert with lived experience of the condition; appropriately qualified professionals are the experts in terms of the science that underpins diagnosis and treatments, and the two must listen and learn from each other. Some say that ‘the real expert is always the patient’, and this is true, but both professionals and patients must avoid positioning themselves upon a polarised continuum. Good care occurs when professionals recognise patient expertise. Recognition of professional knowledge in diagnosis and treatment is an equally important component of good care, and one that will avoid disadvantaging some patient groups. Just as one would never expect that disadvantage in cancer or cardiac failure treatment, one should not expect it in the field of NDDs and mental health conditions.

Abstract
Autistic adults who have a history of committing crimes present a major problem for providers of services in terms of legal disposal options and possible interventions, and greater understanding of this group and their associated needs is required. For this reason, we aimed to investigate the face validity of a proposed sub-typology of autistic adults detained in secure psychiatric hospitals in the United Kingdom. Initially, a focus group was completed with psychiatrists, clinical psychologists, healthcare workers, family members and autistic adults who had been detained in hospital, leading to revisions of the sub-typology. Following this, a consensus rating exercise of 10 clinical vignettes based on this subtypology with three rounds was completed with 15 psychiatrists and clinical psychologists; 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. This study suggests that the further validity of the sub-typology should be investigated within a larger study, as these subtypes have the potential to directly inform the hospital care pathway such that length of stay can be minimised.

Issues: The current COVID-19 pandemic is a pressing world crisis and people with intellectual disabilities are vulnerable due to disparity in healthcare provision and physical and mental health multi-morbidity. Whilst most people will develop mild symptoms upon contracting SARS-CoV-2, some will develop serious complications. There are no current data about the impact of COVID-19 for people with intellectual disabilities.
Position: The aim of this paper is to present guidelines for the care and treatment of people with intellectual disabilities during the COVID-19 pandemic for both community teams providing care to people with intellectual disabilities and inpatient psychiatric settings. The guidelines cover specific issues associated with hospital passports, individual COVID-19 care plans, the important role of families and carers, capacity to make decisions, issues associated with social distancing, ceiling of care/treatment escalation plans, mental health and challenging behaviour, and caring for someone suspected of contracting or has contracted SARS-CoV-2 within community or inpatient psychiatric settings. We have proposed that the included conditions recommended by Public Health England to categorise someone as high risk of severe illness due to COVID-19 should also include mental health and challenging behaviour.
Conclusions: There are specific issues associated with providing care to people with intellectual disabilities and appropriate action must be taken by care providers to ensure that disparity of healthcare is addressed during the COVID-19 pandemic. We recognise that our guidance is focused upon healthcare delivery in England and invite others to augment our guidance for use in other jurisdictions.

(Authors: Regi Alexander, Ambiga Ravi, Helene Barclay, Indermeet Sawhney, Verity Chester, Vicki Malcolm, Kate Brolly, Kamalika Mukherji, Asif Zia, Reena Tharian, Andreana Howell, Tadhgh Lane, Viv Cooper OBE, Peter E Langdon)

There are approximately 1.2 million people with an intellectual disability (ID) in the UK. They have comorbid mental health problems at a rate of about 40%, which is substantially higher than the general population. About 21% of them are in contact with specialist health services and about 0.16% (1955) are in in-patient psychiatric settings. For every one person in the general population who dies from an avoidable cause, 3 people with intellectual disability die from a condition amenable to good quality care. It is a startling statistic that highlights the vulnerability of this group, a vulnerability that is even more worrying in the light of the COVID 19 pandemic. RADIANT has already collated on its website, a set of useful guidance documents from a variety of sources. Further, we publish today, the first of a series of rapid guidance documents on physical and mental healthcare for this group. It is the result of a consultation process that included professionals from a range of disciplines and experts by experience.
1.People with intellectual disability and mental health/ behavioural problems: guidance on COVID-19 for in-patient psychiatric settings
​2.People with intellectual disability and mental health/ behavioural problems: guidance on COVID-19 for community settings
​Please do contact RADIANT with your comments and suggestions.
Keep well all of you.
Professor Regi T Alexander
Convenor, RADIANT
​@regalexa

Aims
To identify comorbidities, demographic and clinical factors of those individuals with intellectual disability who have died from COVID-19.
Method
An observational descriptive case series looking at deaths because of COVID-19 in people with intellectual disability was conducted. Along with established risk factors observed in the general population, possible specific risk factors and comorbidities in people with intellectual disability for deaths related to COVID-19 were examined. Comparisons between mild and moderate-to-profound intellectual disability subcohorts were undertaken.
Results
Data on 66 deaths in individuals with intellectual disability were analysed. This group was younger (mean age 64 years) compared with the age of death in the general population because of COVID-19. High rates of moderate-to-profound intellectual disability (n = 43), epilepsy (n = 29), mental illness (n = 29), dysphagia (n = 23), Down syndrome (n = 20) and dementia (n = 15) were observed.
Conclusions
This is the first study exploring associations between possible risk factors and comorbidities found in COVID-19 deaths in people with intellectual disability. Our data provides insight into possible factors for deaths in people with intellectual disability. Some of the factors varied between the mild and moderate-to-profound intellectual disability groups. This highlights an urgent need for further systemic inquiry and study of the possible cumulative impact of these factors and comorbidities given the possibility of COVID-19 resurgence.

Purpose
People with Intellectual Disability (ID) and epilepsy are more likely to experience psychiatric conditions, challenging behaviour (CB), treatment resistance and adverse effects of anti-seizure medications (ASM) than those without. This population receives care from various professionals, depending on local care pathways. This study evaluates the training status, confidence, reported assessment and management practices of different professional groups involved in caring for people with ID, epilepsy and CB.
Methods
A cross sectional survey using a questionnaire developed by expert consensus which measured self-reported training status, confidence, and approaches to assessment and management of CB in people with ID and epilepsy was distributed to practitioners involved in epilepsy and/or ID.
Results
Of the 83 respondents, the majority had either a psychiatry/ID (n = 39), or Neurology/epileptology background (n = 31). Psychiatry/ID and Neurology/epileptology had similar confidence in assessing CB in ID-epilepsy cases, but Psychiatry/ID exhibited higher self-rated confidence in the management of these cases. While assessing and managing CB, Psychiatry/ID appeared more likely to consider mental health aspects, while Neurology/epileptology typically focused on ASM.
Conclusion
Psychiatry/ID and Neurology/epileptology professionals had varying training levels in epilepsy, ID and CB, had differing confidence levels in managing this patient population, and considered different factors when approaching assessment and management. As such, training opportunities in ID should be offered to neurology professionals, and vice versa. Based on the findings, a best practice checklist is presented, which aims to provide clinicians with a structured framework to consider causal explanations for CB in this population.

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.

Autism spectrum disorders (ASDs) are associated with difficulties in social interaction, communication and restricted, repetitive behaviours. Much is known about their community prevalence among adults, data on adult inpatients within an acute mental health setting is lacking. This pilot study aimed to estimate the prevalence of ASDs among adults admitted to acute mental health wards and to examine the association between ASDs and psychiatric and physical comorbidities within this group.
A multiple-phase approach will be used. Phase I will involve testing of 200 patients and corresponding informants, using the autism quotient (AQ), the informant version of the Social Responsiveness Scale, second edition—Adult, the self and informant versions of the Adult Social Behaviour Questionnaire and the EuroQol-5D-5L. Patients with intellectual disability (ID) will bypass Phase I. Phase II will involve diagnostic testing of a subgroup of 40 patients with the Diagnostic Interview for Social and Communication Disorders, the Autism Diagnostic Observation Schedule version 2 and the ASD interview within the Schedules for Clinical Assessment in Neuropsychiatry version 3. 25±5 patients will not have ID and be selected via stratified random sampling according to AQ score; 15±5 patients will have ID. Phase II patients will be interviewed with the Physical Health Conditions and Mental Illness Diagnoses and Treatment sections of the 2014 Adult Psychiatric Morbidity Survey. Prevalence estimates will be based on the proportion of Phase II participants who satisfy the 10th revision of the International Statistical Classification of Diseases and Related Health Problems Diagnostic Criteria for Research (ICD-10-DCR) and the 5th edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5) diagnostic criteria for ASD, adjusting for selection and non-response. Univariate analysis will be conducted for comorbidities to identify the level of their association with an ASD diagnosis.

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.

Authors: Verity Chester, Samuel Tromans, Chaya Kapugama, Ignatius Gunaratna, Peter Langdon, Regi T Alexander
Purpose
The diagnosis of psychosis in individuals with autism spectrum disorder poses a unique clinical challenge. The presence of intellectual disability further complicates the diagnostic picture. Reliable and timely diagnosis of psychosis in such individuals minimizes the duration of untreated psychotic symptoms and the subsequent impact on the quality of life of the patients concerned.
Design/methodology/approach
The authors present four patients with psychosis, autism spectrum disorder and intellectual disability, who have received care within forensic mental health and intellectual disability settings. These examples demonstrate the interaction between these conditions, as well as issues pertaining to diagnosis and management.
Findings
In all four patients, sustained use of antipsychotic medication was objectively associated with an improvement in psychotic symptoms and quality of life. In instances where autistic phenomena were accentuated upon development of psychosis, such features returned to the baseline levels evident prior to the onset of psychosis.
Practical implications
The discussion and related case examples could improve understanding of the possibility of psychosis in individuals with autism spectrum disorder and intellectual disability, and increase awareness of this diagnostic possibility among healthcare professionals.
Originality/value
This is the first published case series illustrating the challenges of diagnosing psychosis in individuals with autism spectrum disorder and intellectual disability.

Introduction: Rehabilitation services for people with mental illnesses have been extensively researched. However, services with similar aims and specifications for patients with intellectual disabilities (ID) have had little focus. Method: This study describes the characteristics and outcomes of 21 patients admitted to a specialist ID rehabilitation service over an 8 year timeframe. Results: Rather that solely accepting “step down” referrals, some patients were referred from community settings. During the study, 20 patients were discharged, 80% to lower levels of service restriction, while 14.3% were referred to higher levels. Discussion: The study suggested that rehabilitation services have an important role within the wider service model for people with ID. Within the service studied, patient were referred from both higher and lower levels of restriction, suggesting the rehab service “bridged the gap” between inpatient and community settings, supporting the aim of caring for patients in the least restrictive setting for their needs.

Introduction “Head banging” is a common form of self-harm, linked to numerous negative outcomes including significant brain damage. However, little research has investigated head banging behaviour and its correlates in clinical populations. Method Head banging episodes were identified from the incident records (n = 5417) of two inpatient forensic services (one intellectual disability and one mental health), using relevant search terms. Rates were compared between individual patients, by gender, diagnosis and level of security. Incident accounts were analysed qualitatively using thematic analysis. Results Head banging incidents occurred approximately every three days in each service, with 229 incidents recorded in one year. Individual patient rates varied widely, ranging from one to 38 incidents within one year. Women, and patients in higher levels of therapeutic security, were significantly more likely to engage in head banging. Qualitative incident reports indicated that head banging was associated with mental distress, anger, and psychotic experiences. Discussion Head banging occurs frequently in forensic services, and has documented associations with traumatic brain injury in affected individuals, thus negatively impacting progress through the care pathway and treatment outcomes. Further research should investigate short and long term management strategies and treatment approaches, in order to minimise harm.

Background: Inpatient mental health settings have been described as “obesogenic”, due to factors including psychotropic medication, high calorie food provision, restricted physical activity and sedentary lifestyles. No research has investigated the prevalence of obesity among forensic learning disability inpatients, despite this population’s increased risk. Materials and Methods: The weight and Body Mass Index (BMI) data of 46 inpatients (15 women and 31 men) within a specialist learning disability forensic service was examined on, and during admission. Results: Only 13% of inpatients were a normal weight at admission, whereas 87% were overweight or obese. During admission, 61% gained weight, and 2% maintained. However, 37% lost weight, although many remained overweight / obese. Women gained more weight during their admission, but were also more successful in losing weight. There was no correlation between length of stay and weight. Conclusions: The results highlight the need for effective, gender sensitive weight management interventions within similar services nationally.

Method: A multinational, multi-setting, cross-sectional service evaluation and baseline audit was completed. Data were collected from UK hospitals, UK community settings, Sri Lanka and Hong Kong. A semi-structured questionnaire was completed by treating clinicians, capturing demographic details, prevalence rates of intellectual disability and psychotropic medication use, alongside psychiatric co-morbidity. Results: A sample size of 358 was obtained, with 65% of included participants treated in an inpatient setting. Psychotropic use was prevalent (90%) in our sample, particularly antipsychotics (74%). The prevalence of PB was high (83%). There was no statistically significant association between psychotropic prescription and recorded psychiatric co-morbidity, suggesting prevalent ‘off-label’ use for PBs, or poor recording of psychiatric co-morbidity. There was some evidence of possible diagnostic overshadowing due to the PB classification. A higher dose of psychotropic medication was associated with aggression toward others (P = 0.03). Conclusions: We found evidence of prevalent potential ‘off-label’ use for psychotropic medication, which may be due to PBs. We also found evidence of potential diagnostic-overshadowing, where symptoms of psychiatric co-morbidity may have been attributed to PBs. Our findings provide renewed importance, across borders and health systems, for clinicians to consider a holistic approach to treating PBs, and attempting to best understand the precipitants and predisposing factors before psychotropic prescribing.

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.

Background: There is limited empirical information on service-level outcome domains and indicators for the large number of people with intellectual disabilities being treated in forensic psychiatric hospitals.

Aims: This study identified and developed the domains that should be used to measure treatment outcomes for this population.

Method: A systematic review of the literature highlighted 60 studies which met eligibility criteria; they were synthesised using content analysis. The findings were refined within a consultation and consensus exercises with carers, patients and experts.

Results: The final framework encompassed three a priori superordinate domains: (a) effectiveness, (b) patient safety and (c) patient and carer experience. Within each of these, further sub-domains emerged from our systematic review and consultation exercises. These included severity of clinical symptoms, offending behaviours, reactive and restrictive interventions, quality of life and patient satisfaction.

Conclusions: To index recovery, services need to measure treatment outcomes using this framework.

Aims and method: Relational security is an important component of care and risk assessment in mental health services, but the utility of available measures remains under-researched. This study analysed the psychometric properties of two relational security tools, the See Think Act (STA) scale and the Relational Security Explorer (RSE).
Results; The STA scale had good internal consistency and could highlight differences between occupational groups, whereas the RSE did not perform well as a psychometric measure.
Clinical implications: The measures provide unique and complimentary perspectives on the quality of relational security within secure services, but have some limitations. Use of the RSE should be restricted to its intended purpose; to guide team discussions about relational security, and services should refrain from collecting and aggregating this data. Until further research validates their use, relational security measurement should be multidimensional and form part of a wider process of service quality assessment.
© 2017 The Authors
This is an open-access article published by the Royal College of Psychiatrists and distributed under the terms of the Creative Commons Attribution License (http://creativecommons.org/licenses/by/4.0), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.

Traumatic brain injury (TBI) screening in forensic populations has been recommended, due to a high prevalence, links to specific offence profiles and poorer outcomes, such as higher rates of psychiatric disturbance, longer stays in prison, and reoffending. Research focusing on TBI among offenders with intellectual disability (ID) is lacking. This study therefore describes the implementation of TBI screening using the Brain Injury Screening Index (BISI©), TBI prevalence and correlates in a forensic ID service. TBI appeared under recorded in case notes, with considerably more patients self-reporting TBI. Reported causes of TBI differed somewhat to the general population, including childhood physical abuse, self-harming behaviour, and assault. Approximately one-third of injuries did not receive any treatment. Though further adaptations may be required on current screening measures for TBI in offenders with ID, screening can provide valuable information, contributing positively to individual patient therapeutic and risk formulations.

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.