Ashok Roy

“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 t...

Development and validation of the Learning DisabilitiesDevelopment and Validation of the Learning Disabilities Needs Assessment Tool (LDNAT), a HoNOS-based needsassessment tool for use with people with intellectualdisability

BACKGROUND In meeting the needs of individuals with intellectual disabilities (ID) who access health services, a brief, holistic assessment of need is useful. This study outlines the development and testing of the Learning Disabilities Needs Assessment Tool (LDNAT), a tool intended for this purpose. METHOD An existing mental health (MH) tool was extended by a multidisciplinary group of ID practitioners. Additional scales were drafted to capture needs across six ID treatment domains that the group identified. LDNAT ratings were analysed for the following: item redundancy, relevance, construct validity and internal consistency (n = 1692); test-retest reliability (n = 27); and concurrent validity (n = 160). RESULTS All LDNAT scales were deemed clinically relevant with little redundancy apparent. Principal component analysis indicated three components (developmental needs, challenging behaviour, MH and well-being). Internal consistency was good (Cronbach alpha 0.80). Individual item test-retest reliability was substantial-near perfect for 20 scales and slight-fair for three scales. Overall reliability was near perfect (intra-class correlation = 0.91). There were significant associations with five of six condition-specific measures, i.e. the Waisman Activities of Daily Living Scale (general ability/disability), Threshold Assessment Grid (risk), Behaviour Problems Inventory for Individuals with Intellectual Disabilities-Short Form (challenging behaviour) Social Communication Questionnaire (autism) and a bespoke physical health questionnaire. Additionally, the statistically significant correlations between these tools and the LDNAT components made sense clinically. There were no statistically significant correlations with the Psychiatric Assessment Schedules for Adults with Developmental Disabilities (a measure of MH symptoms in people with ID). CONCLUSIONS The LDNAT had clinically utility when rating the needs of people with ID prior to condition-specific assessment(s). Analyses of internal and external validity were promising. Further evaluation of its sensitivity to changes in needs is now required.

Development and validation of the Learning Disabilities Needs Assessment Tool (LDNAT), a HoNOS‐based needs assessment tool for use with people with intellectual disability

BACKGROUND In meeting the needs of individuals with intellectual disabilities (ID) who access health services, a brief, holistic assessment of need is useful. This study outlines the development and testing of the Learning Disabilities Needs Assessment Tool (LDNAT), a tool intended for this purpose. METHOD An existing mental health (MH) tool was extended by a multidisciplinary group of ID practitioners. Additional scales were drafted to capture needs across six ID treatment domains that the group identified. LDNAT ratings were analysed for the following: item redundancy, relevance, construct validity and internal consistency (n = 1692); test-retest reliability (n = 27); and concurrent validity (n = 160). RESULTS All LDNAT scales were deemed clinically relevant with little redundancy apparent. Principal component analysis indicated three components (developmental needs, challenging behaviour, MH and well-being). Internal consistency was good (Cronbach alpha 0.80). Individual item test-retest reliability was substantial-near perfect for 20 scales and slight-fair for three scales. Overall reliability was near perfect (intra-class correlation = 0.91). There were significant associations with five of six condition-specific measures, i.e. the Waisman Activities of Daily Living Scale (general ability/disability), Threshold Assessment Grid (risk), Behaviour Problems Inventory for Individuals with Intellectual Disabilities-Short Form (challenging behaviour) Social Communication Questionnaire (autism) and a bespoke physical health questionnaire. Additionally, the statistically significant correlations between these tools and the LDNAT components made sense clinically. There were no statistically significant correlations with the Psychiatric Assessment Schedules for Adults with Developmental Disabilities (a measure of MH symptoms in people with ID). CONCLUSIONS The LDNAT had clinically utility when rating the needs of people with ID prior to condition-specific assessment(s). Analyses of internal and external validity were promising. Further evaluation of its sensitivity to changes in needs is now required.

Supporting people with complex mental health needs to get a life! The role of the Supported Living Outreach Team

This paper reports on the development and service delivery of the Supported Living Outreach Team for people with severe psychiatric, behavioural and forensic needs in a city with a population of 1.1 million. The authors discuss the reasons why the team was formed, and the partnerships it has formed with local housing and care providers in order to enable people with very complex needs to lead ordinary lives in their local communities. The pathway of team involvement is described, starting with the initial assessment, setting up and monitoring of new schemes, through to discharge. Also described are the measures the team uses to monitor its effectiveness, the benefits the team has brought to the service, and the hurdles and barriers it has had to overcome on its journey to support people with complex needs to live safely in their local communities.

Challenges and pitfalls of antipsychotic prescribing in people with learning disability.

In this opinion piece we highlight the current concerns of prescribing antipsychotics to people with learning disability (PWLD) and propose a system of monitoring of antipsychotic prescribing in general practice that, we argue, will reduce inappropriate antipsychotic use. Learning disability, synonymous with the term ‘intellectual disabilities’,1 affects about 1–2% of the general population2 and is characterised by significant impairments of both intellectual and adaptive functioning, and an onset before 18 years.3 PWLD have high rates of ‘challenging behaviour’ (CB) — for instance, acts of aggression towards people or property, self-neglect, and self-harm — and risk exploitation.2 CB is a social construct to enumerate a behavioural or mental pattern that may cause suffering or a poor ability to function in life. It is best understood based on learning theory and the principles of applied behavioural analysis. Mental illness is a structured diagnostic concept that encompasses a large range of recognised emotional and behavioural disorders and its diagnosis requires robust application of the diagnostic schedules. It is reasonable to state that most PWLD with mental illness have CB but the majority of PWLD with CB might not satisfy criteria for mental illness. Therefore, the therapeutic approach to CB can be very different from a diagnostic one. However, there is significant overlap between CB and the presence of mental illnesses, with the latter also being higher in PWLD than in the general population. Deficits in communication, atypical clinical presentations, and differences in diagnostic coding methods mean that mental illness can be under-recorded, particularly in those with severe degrees of learning disability.1,4 This means that the clinician needs to be aware not just of what is observed behaviourally, but also whether there is something underlying diagnostically. A formulation based …

Intellectual disability and the ICD-11: towards clinical utility?

Purpose – The 11th revision of the International Classification of diseases which sets global standards for defining, reporting and managing health conditions is under way. The International Classification of Diseases (ICD) underpinning principle of clinical utility is currently poor for persons with Disorders of Intellectual Development (DID) and mental disorders. This impedes access to healthcare resources; services and social inclusion thereby further aggravating their vulnerability. The purpose of this paper is to present a critical overview and evidence informed recommendations within the context of an international collaborative programme, undertaken by the Faculty of Psychiatry of Intellectual Disability, Royal College of Psychiatrists, UK with support from the World Health Organisation (WHO). Design/methodology/approach – The authors carried out: first, a systematic review (SR) of literature, using PRISMA guidelines regarding the reliability, validity and utility of the ICD-10/Diagnostic and Statistical Manual of Mental Disorders (DSM) diagnostic criteria in people with DID (PWDID); second, a national and international consultation exercise with partners, stakeholders and experts; third, a multicentric survey of problem behaviours in PWDID; and finally, information dissemination/dialogues including presentations and workshops at key scientific events, consultation networking, data gathering and consensus building. Findings – The SR revealed a dearth of robust studies – most consisting of weak research methodologies. Significant difficulties were highlighted regarding the application of diagnostic criteria in the current classificatory systems – particularly in people with severe/moderate DID. Recommendations supported the introduction WHERE APPROPRIATE of modifications based on observed phenomena (signs) in PWDID in lieu of reported symptoms to facilitate DIAGNOSIS AND better access to healthcare and the community. Heterogeneity precluded quantitative pooling and meta-analysis. The consensus building exercise globally revealed that problem behaviours were the commonest reasons for referral to healthcare services with significant numbers without a diagnosed mental disorder being prescribed psychoactive medication. Research limitations/implications – The consensus gathering exercise WAS SELECTIVE AND did not cover all of the 194 member states of WHO due to resource and time constraints and this constitutes the main limitation of our study. Based on the SR and expert consensus, the authors submitted evidence informed pragmatic proposals to the WHO aimed at addressing the shortcomings of the ICD-10. The key recommendations focused on improving clinical utility within the context of epistemic iteration which would consolidate and strengthen the future evidence base. It was also recommended that self-injurious behaviour should form a standalone sub category in view of its relevance for healthcare services and resources which underpin clinical utility. Practical implications – The ICD-11 is a global, multidisciplinary and multilingual development for public health benefit with 70 per cent of the worlds health expenditures assigned using this system for resource allocation. Currently mental disorders in PWDID can be misinterpreted, unrecognised and under reported resulting in barriers to access to treatment and healthcare resources. Conversely disorders may be over diagnosed when the inherent discrepancies between the chronological age and the developmental level of functioning are not considered. Conclusions and recommendations from this study will result in better diagnosis of mental disorders and healthcare resources in this population. Social implications – PWDID are a vulnerable sector of the population with an increased prevalence of mental health problems who are marginalised and discriminated by society. Early detection, treatment and management of these conditions will prevent further decompensation and stigmatisation. Originality/value – To the best of the authors knowledge this is the first comprehensive, large-scale study which evaluates the ICD classificatory system within the context of clinical utility for PWDID, including experts and stakeholders from both lower/middle- and high-income countries. The international consultation/consensus building process culminating in the formulation of evidence informed recommendations, aimed at improving the clinical utility of the ICD-11 for this population, has the potential to improve access to appropriate healthcare and treatment and consequent enhancement of their quality of life.

A five decade retrospective review of admission trends in a NHS intellectual disability hospital

Purpose – The purpose of this paper is to examine the trend of admissions and inpatient characteristics in a NHS intellectual disability hospital from 1975 to 2013, in particular looking at the effect following the Winterbourne View scandal. Design/methodology/approach – A retrospective review of all admissions over a three-year period (January 2011-January 2013) was completed. This information was compared with admissions to the same hospital in three-year period over the last four decades (1975-1977, 1985-1987, 1995-1997, and 2003-2006). Number of admissions, gender, age, source of admission, length of stay, reasons for admission, type of admission, and diagnosis of psychiatric illnesses were included. Findings – There were 87 admissions (including 29 from out of area) in the study period of 2011-2013. The number of admissions had varied over the years but male admissions were consistently higher than female. A majority of people stayed over six months. For the first time in five decades, there were mor...

Correlates for the risk of specialist ID hospital admission for people with intellectual disabilities: development of the LDNAT inpatient index

Purpose The purpose of this paper is to analyse ratings data from the recently developed Learning Disability Needs Assessment Tool (LDNAT) to identify factors associated with specialist intellectual disability (ID) hospital admissions. Design/methodology/approach Ratings from 1,692 individuals were analysed and the LDNAT items differing significantly between inpatients and non-inpatients were identified. Statistical analyses on total scores derived from these items were used to calculate an optimal cut-off. This LDNAT inpatient index score was also confirmed via an alternative statistical technique. Findings On average, 18 of the 23 LDNAT item ratings were significantly higher in people with ID assessed as inpatients compared to those rated in community settings. Using the total of these items, the resulting LDNAT inpatient index was analysed. A cut-off score of 22.5 was calculated to be the optimal balance between sensitivity (0.833) and specificity (0.750). This was confirmed by calculating the Youden index (j=0.583). At this level 68 per cent of inpatients and 81 per cent of non-inpatient cases were correctly identified. Practical implications Currently there is a national (UK) programme to radically reduce the amount of specialist inpatient care for people ID. This will necessitate early identification of individuals most at risk of admission together with investment in improved, proactive community services if admissions to a diminishing bed-base are to remain manageable. Originality/value This study confirms the associations between mental health difficulties, challenging behaviour and specialist hospital admissions for people with ID, extending existing research by translating these findings into a clinically usable risk index.

The provision of care to adults with an intellectual disability in the UK. A Special report from the intellectual disability UK chapter ILAE

PURPOSE This article reflects the report by the British Branch of the International League Against Epilepsy (ILAE) Working Group on services for adults with epilepsy and intellectual disability (ID). Its terms of reference was to explore the current status of aspects of the care of people with an ID and epilepsy. METHODS Survey content was developed from key themes identified by consensus of the working group. An electronic survey was distributed via email. The sample population was the membership of the ILAE UK, Royal College of Psychiatrists (RCPsych) Faculty of ID, Epilepsy Nurses Association (ESNA), and the Association of British Neurologists (ABN). Following a six week response period the data was then collated, anonymised and distributed to the working group in order that opinion statements could be gathered. RESULTS The time taken for individuals with both new-onset and established epilepsy to undergo routine investigation was commonly at least 1-3 months, far beyond recommendations made by NICE (CG20). A small minority of clinicians would not consider non-pharmacological interventions including epilepsy surgery, vagus nerve stimulation, and ketogenic diet for this population. Almost universally responders are actively involved in the assessment and management of key risk areas including risk of drowning, hospitalization, medication side effects, and sudden unexpected death in epilepsy (SUDEP). CONCLUSION This investigation identifies key themes and recommendations relating to care delivery and meeting the complex needs of people with ID and epilepsy. Adults with ID and epilepsy appear to exist in a unique, but inadequate, segment of epilepsy care delivery.

Under representation of people with epilepsy and intellectual disability in research

Purpose One quarter of people with epilepsy have an intellectual disability (ID) and one fifth of people with an ID have epilepsy. Both conditions are associated with higher levels of morbidity, stigma and premature mortality. There have been calls for action to promote more research in this group. We examined if this group are represented adequately in current research. Methods The proportion of research output in epilepsy conferences and publications relevant to ID and the proportion in ID conferences and publications on epilepsy for 2015–2016 were identified. As the percentage of children in the population with epilepsy is 17%, research output of this group was compared with the ID group. Recognised material was classified based on whether it applied to general epilepsy/ID research, children with epilepsy or people with epilepsy and ID. Data was analysed to determine the proportion of presented research specifically identifying people with epilepsy and ID. Results Fewer than 2% of presentations at epilepsy conferences specifically related to the ID and epilepsy group compared to 15% relating to children with epilepsy. Similarly only 1.4% of the research presented at major ID conferences related to those with people with epilepsy and ID. About 5% of published research in the field of epilepsy related to those with ID as compared with 24% for children with epilepsy. Twelve percent of published research in ID specifically identified epilepsy. Conclusion Publications and conference presentations, on the population with epilepsy and comorbid ID is under-represented. Increased research in this area might assist in improving the quality of care for this relatively neglected group.