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Background: The Draft Mental Health Bill proposes removal of both intellectual disability and autism from Section 3 of the Mental Health Act for England and Wales (MHA). This would lead to people with intellectual disability (PwID) and/or autism could not be detained beyond 28 days, in the absence of diagnosed co-occurring mental illness. Aim: To obtain views of psychiatrists working with PwID in England and Wales regarding the proposed MHA changes. This study focusses specifically on the impact on PwID. Methods: A cross-sectional online mixed methodology survey of Likert and free-text response questions was developed, to ascertain perceptions of proposed legislative changes to the MHA. A non-discriminatory exponential snowballing technique leading to non-probability sampling was used to disseminate the survey. Quantitative data was analysed using descriptive statistics, Mann-Whitney and Fisher's exact tests. Thematic analysis was conducted on free text responses. Results: A total of 82 psychiatrists (33%) from approximately 250 eligible completed the survey. Nearly two-thirds (64%) reported good awareness of the proposed changes, with over half (55%) reporting disagreement with the changes. Psychiatrists working in inpatient settings for PwID reported increased awareness of the changes, less agreement with the reforms, and increased expectations of the reforms having negative unintended consequences, compared to their peers working exclusively in the community. Consultants reported greater disagreement with the changes compared to their non-consultant peers. Qualitative analysis identified five main themes: impact on diagnosis and treatment, seeking alternative options, introducing inequities, resources, and meeting holistic care goals through the Care, Education and Treatment Reviews (CETR) process. Conclusion: Psychiatrists working with PwID report widespread disagreement with the proposed changes to the MHA for PwID, with greater levels of disagreement among those working in inpatient services. Caution with respect to the proposed changes, and monitoring of the impact of the changes if implemented, is advised. [ABSTRACT FROM AUTHOR]

Fragile X syndrome (FXS) is the most common inherited cause of Intellectual Disability. There is a broad phenotype that includes deficits in cognition and behavioral changes, alongside physical characteristics. Phenotype depends upon the level of mutation in the FMR1 (fragile X messenger ribonucleoprotein 1) gene. The molecular understanding of the impact of the FMR1 gene mutation provides an opportunity to target treatment not only at symptoms but also on a molecular level. We conducted a systematic review to provide an up-to-date narrative summary of the current evidence for pharmacological treatment in FXS. The review was restricted to randomized, blinded, placebo-controlled trials. The outcomes from these studies are discussed and the level of evidence assessed against validated criteria. The initial search identified 2377 articles, of which 16 were included in the final analysis. Based on this review to date there is limited data to support any specific pharmacological treatments, although the data for cannabinoids are encouraging in those with FXS and in future developments in gene therapy may provide the answer to the search for precision medicine. Treatment must be person-centered and consider the combination of medical, genetic, cognitive, and emotional challenges. [ABSTRACT FROM AUTHOR]

Background: Approximately one quarter of people with an intellectual disability (PwID) have epilepsy of whom nearly three-quarters are pharmaco-resistant. There are higher reported neuropsychiatric side-effects to anti-seizure medication (ASM) in this group. Levetiracetam (LEV) is a first-line ASM with a stronger association with neuropsychiatric symptoms for PwID than other ASMs. Brivaracetam (BRV) is a newer ASM. Recent studies suggest a beneficial effect of swapping people who experience neuropsychiatric events with LEV to BRV. However, there is limited evidence of this for PwID. This evaluation analyses real world outcomes of LEV to BRV swap for PwID compared to those without ID. Methods: We performed a multicentre, retrospective review of clinical records. Demographic, clinical characteristics and reported adverse events of patients switched from LEV to BRV (2016–2020) were recorded at 3 months pre and 6- and 12-month post-BRV initiation. Outcomes were compared between PwID and those without and summarised using cross-tabulations and logistic regression models. A Bonferroni correction was applied. Results: Of 77 participants, 46 had ID and 52% had a past psychiatric illness. 71% participants switched overnight from LEV to BRV. Seizure reduction of > 50% was seen in 40% patients. Psychiatric illness history was predictive of having neuropsychiatric side-effects with LEV but not BRV (p = 0.001). There was no significant difference for any primary outcomes between PwID versus without ID. Conclusions: Switching from LEV to BRV appears as well tolerated and efficacious in PwID as those without ID with over 90% still on BRV after 12 months. [ABSTRACT FROM AUTHOR]

Background: Around 2% of the population have intellectual disabilities. Over one-third people with intellectual disabilities (PwID) present with 'challenging behaviour', which nosologically and diagnostically is an abstract concept. Challenging behaviour is influenced by a range of bio-psycho-social factors in a population, which is unable to suitably comprehend and/or communicate concerns. This predisposes to poor health and social outcomes. There is no evidence-based treatments for managing challenging behaviour. Cannabidiol (CBD) and tetrahydrocannabinol (THC) are being trialled for a range of disorders, which are over-represented in PwID and provoke challenging behaviours, such as severe epilepsy, spasticity, post-traumatic stress disorder, social phobia, pain, etc. Methods: This perspective review explores the different conditions, which benefit from medicinal CBD/THC preparations, by analysing recent literature from neurobiological, pre-clinical and clinical studies related to the topic. The evidence is synthesised to build an argument of the therapeutic benefits and challenges of medicinal cannabis to manage severe challenging behaviour in PwID. Results: There is developing evidence of medicinal CBD/THC improving psychiatric and behavioural presentations in general. In particular, there is emergent proof in certain key areas of influence of medicinal CBD/THC positively supporting challenging behaviour, for example in children with neurodevelopmental disorders. However, there are significant challenges in employing such treatments in vulnerable populations such as PwID. Conclusion: Further clinical research for the considered use of medicinal CBD/THC for challenging behaviour management in PwID is needed. Strong co-production with experts with lived experience is needed for further testing to be done in this exciting new area. [ABSTRACT FROM AUTHOR]

Background: The Health of the Nation Outcomes Scales for people with Learning Disabilities (HoNOS-LD) is an 18-item measure which provides a structured and standardized approach to rating various clinical and psychosocial outcomes and has been in use nationally since 2002. Aims: To revise and improve the HoNOS-LD's utility in contemporary intellectual disability (ID) services whilst retaining its original objectives and five-point severity ratings. Method: ID clinicians were invited to complete an online survey, rating each item on the existing measure for being fit for purpose, identifying issues and suggesting improvements based on their experience of using the HoNOS-LD in practice. Scales were then assessed and revised sequentially; survey responses were used to inform discussion and revisions to the HoNOS-LD by the Advisory Board. Results: A total of 75 individuals replied. Respondents had used HoNOS-LD for an average of 8.0 years (S.D. 5.28 years) and 88% found the scale to be useful in their practice. On average, respondents used HoNOS-LD ratings to inform care 42.4% of the time (S.D. 33.5%). For each scale there was a significant negative correlation between the percentage of positive/very positive respondent ratings and the number of changes proposed. Common changes included simplifying terms, reducing ambiguity and replacing anachronistic language. Conclusion: The changes outlined in this paper are based on the advisory group's expert consensus. These changes are intended to improve reliability and validity but now need empirical testing as well as review by service users. [ABSTRACT FROM AUTHOR]

Background: People with intellectual disabilities (PWID) are at six times higher risk of death due to COVID-19. To mitigate harm, as a high-risk group, significant social changes were imposed on PWID in the UK. Alongside these changes, the uncertainty of the pandemic influence, caused PWID and their carers to encounter significant stress. The evidence of the pandemic's psycho-social impact on PWID originates mainly from cross-sectional surveys conducted with professionals and carers. There is little research on the longitudinal psycho-social impact of the pandemic from PWID themselves. Aims: To examine the long-term psycho-social impact of the pandemic on PWID. Methods: A cross-sectional survey, following STROBE guidance, of 17 Likert scale statements (12 to PWID and 5 to their carers) to ascertain the pandemic's psychosocial impact was conducted. Every other PWID open to a specialist Intellectual Disability service serving half a UK County (pop:500,000) was selected. The same survey was re-run with the same cohort a year later. Descriptive statistics, Mann-Whitney, Chi-square and unpaired-t tests were used to compare responses. S ignificance is taken at p <.05. Comments were analysed using Clarke and Braun's approach. Results: Of 250 PWID contacted, 100 (40%) responded in 2020 and 127 (51%) in 2021. 69% (2020) and 58% (2021) reported seeking medical support. Carers, (88%, 2020 and 90%, 2021) noticed emotional changes in PWID they cared for. 13% (2020) and 20% (2021) of PWID had their regular psychotropics increased. 21% (2020) and 24% (2021) had their pro re nata (PRN) medication adjusted. PWID or carers demonstrated no statistically significant variation in responses between themselves from 2020 to 2021. PWID were more likely to report being upset/distressed compared to their carers' perceptions of them in both years (p <.001). Four themes were identified. Conclusion: This longitudinal study highlights the diverse psycho-social impact of the pandemic on PWID in the UK. The Pandemic's psycho-social impact has been significantly underestimated. [ABSTRACT FROM AUTHOR]

Purpose: This commentary explores the challenges and themes enumerated by the associated article "Why am I still in hospital? Evaluation of delayed discharges from two learning disability assessment and treatment units in England". This commentary broadens and outlines the research's background, premise and potential impact. This paper aims to critically examine the evidence on this subject. Design/methodology/approach: This commentary considers the attitudes to inpatient care for people with learning disabilities in the past decade and outlines a possible compact for the future. Findings: Contrary to popular and emotive beliefs that using specialist inpatient psychiatric settings for people with learning disabilities is universally a poor practice, there are defined occasions when such settings are needed and imperative in the clinical pathway. If people with learning disabilities can access inpatient settings at the right time for the right reason, psychiatric outcomes could be improved. Timely discharge is imperative and currently lacking due to a lack of suitable engagement mechanisms between inpatient settings and the community. Thus, evidence-based outcome tools are essential to facilitate appropriate discharge. Originality/value: There is an ongoing debate on the value and utility of specialist inpatient psychiatric units for people with learning disabilities. This commentary provides a balanced, evidence-based insight into this discussion. [ABSTRACT FROM AUTHOR]

Background: Constipation is common in children with intellectual disabilities and/or autism, but poorly researched. This study looks to understand parental knowledge, attitudes and management practices towards constipation in children with intellectual disabilities and/or autism. Methods: A cross‐sectional online survey developed with patient facing organisations was circulated to parents of children with intellectual disabilities and/or autism using an exponential and non‐discriminatory snowballing method for recruitment. A smaller sample were purposively sampled for their in‐depth experiences. Results: Of 68 responses, people were open to discussing constipation and knowledgeable about risk factors. In the qualitative interviews, of 15 parents, they wanted to be treated as an expert in their child's care. They desired a service that was more responsive when in difficulty. While wanting more information about medication options, parents want a more holistic approach. Conclusions: Services need more emphasis on holistic management. Listening to parents and treating them as experts is important. [ABSTRACT FROM AUTHOR]

Background: People with epilepsy (PWE) and people with intellectual disabilities (ID) both live shorter lives than the general population and both conditions increase the risk of death further. We aimed to measure associations between certain risk factors for death in PWE and ID. Methods: A retrospective case–control study was conducted in ten regions in England and Wales. Data were collected on PWE registered with secondary care ID and neurology services between 2017 and 2021. Prevalence rates of neurodevelopmental, psychiatric and medical diagnoses, seizure frequency, psychotropic and antiseizure medications (ASM) prescribed, and health activity (epilepsy reviews/risk assessments/care plans/compliance etc.) recorded were compared between the two groups. Results: 190 PWE and ID who died were compared with 910 living controls. People who died were less likely to have had an epilepsy risk assessment but had a greater prevalence of genetic conditions, older age, poor physical health, generalized tonic–clonic seizures, polypharmacy (not ASMs) and antipsychotic use. The multivariable logistic regression for risk of epilepsy-related death identified that age over 50, medical condition prevalence, antipsychotic medication use and the lack of an epilepsy review in the last 12 months as associated with increased risk of death. Reviews by psychiatrists in ID services was associated with a 72% reduction in the odds of death compared neurology services. Conclusions: Polypharmacy and use of antipsychotics may be associated with death but not ASMs. Greater and closer monitoring by creating capable health communities may reduce the risk of death. ID services maybe more likely to provide this holistic approach. [ABSTRACT FROM AUTHOR]

Background: In recent years, a significant proportion of inpatient facilities for people with intellectual disabilities and/or autism has been de-commissioned in England, This has resulted in individuals with intellectual disabilities being sent to distant hospitals far away from their families and carers leading to challenges in follow-up, community care and interventions. The impact of de-institutionalisation, has often caused patient trauma, family distress and subsequent discharge difficulties. Not every individual with intellectual disabilities and/or autism requires inpatient care but inpatient care when needed has to be local, adequate and appropriate. Aims: To evaluate current evidence of utility of inpatient models for people with intellectual disabilities and outline best clinical practice. Method: PubMed, CINAHL, EMBASE, Cochrane Library, Scopus, Web of Science were searched with key search terms. The search was conducted by the information specialist and identified abstracts screened further for inclusion criteria, methodological issues, and other appropriate characteristics. Twenty-three papers were included in the rapid review. Papers shortlisted had the inclusion criteria applied against the full text version independently by two reviewers. Disagreements regarding eligibility of studies was resolved by discussion and consensus within the project team. Key data related to in-patient models of care was extracted from the included papers, which included year of study, design, study objectives, target population, method/s tested, outcomes reported, country of study/studies, and results. Data extraction was performed by two reviewers and reviewed by the project team. Results: From the review of services for people with intellectual disabilities, we came across four broad models/frameworks/approaches. Evidence on what worked for inpatient service provision tended to be based on models developed and implemented locally. Conclusions: We make recommendations for the best clinical practice and standards. Both clinical service providers and policymakers need to be aware of specific needs of individuals with intellectual disability and/or autism. [ABSTRACT FROM AUTHOR]

Genetic variations are overrepresented in people with intellectual disability (PwID), particularly those with physical and mental health co‐morbidities, but remain significantly under‐diagnosed. Lack of suitable research studies, a natural extension of the complexities posed of consenting and recruitment is considered culpable. There is a resultant dearth of evidence on establishing bespoke genetic studies for adult PwID. This report outlines the challenges faced in the implementation and administration of a pilot genetic study for adult PwID hoping to better inform future genetic study designs for PwID. Adult participants with a diagnosis of ID (ICD10 F70‐F73) and epilepsy (ICD10 G40) were recruited to The Peninsula study exploring genomic stratification in intellectual disability and epilepsy via the ethically approved Royal Devon and Exeter Tissue Bank (RDETB) (16/SC/016). Managed within the National Institute for Health Research (NIHR) Exeter Clinical Research Framework, the RDETB was set up to proactively collect and store 'spare' tissue from routine clinical procedures such as venepunctures for routine good practice biochemistry monitoring. Participants who satisfied the criteria for the need for routine bloods to monitor their general health were identified to be invited for participation. From October 2017 to March 2020 from a total caseload of 375 PwID and epilepsy, 291 were screened (77.6%), 116 (39.9%) identified as potentially eligible and sent study information and genetic samples obtained from 30 (8%). Analysis showed 75% of PwID had some biochemical abnormalities requiring further medical attention. The recruitment was influenced by the clinical care set up in implementing the sanctioned ethics. However, where bloods were achieved it proved to be beneficial in identifying hitherto undiagnosed medical problems. While the challenges to gain consent, are considerable, the reasonable adjustments needed to facilitate participation and the immediate clinical benefits where engagement was successful are significant. [ABSTRACT FROM AUTHOR]

Background: Overprescribing of off‐licence psychotropic medications, particularly antipsychotics, for challenging behaviours in people with intellectual disabilities without a psychiatric disorder is a significant public health concern. In the United Kingdom, the National Health Service England launched an initiative in 2016, 'STopping Over‐Medication of People with learning disabilities, autism or both (STOMP)', to address this concern. STOMP is supposed to encourage psychiatrists in the United Kingdom and elsewhere to rationalise psychotropic medication use in people with intellectual disabilities. The current study aims to gather UK psychiatrists' views and experience of implementing the STOMP initiative. Methods: An online questionnaire was sent to all UK psychiatrists working in the field of intellectual disabilities (estimated 225). Two open‐ended questions allowed participants to write comments in response to these questions in the free text boxes. One question asked about the challenges psychiatrists faced locally to implement STOMP, and the other asked for examples of successes and positive experiences from the process. The free text data were analysed using a qualitative method with the help of the NVivo 12 plus software. Results: Eighty‐eight (estimated 39%) psychiatrists returned the completed questionnaire. The qualitative analysis of free‐text data has shown variation within services in the experience and views of the psychiatrists. In areas with good support for STOMP implementation provided through adequate resources, psychiatrists reported satisfaction in the process with successful antipsychotic rationalisation, better local multi‐disciplinary and multi‐agency working, and increased awareness of STOMP issues among the stakeholders such as people with intellectual disabilities and their caregivers and multidisciplinary teams, and improved quality of life caused by reduced medication‐related adverse events in people with intellectual disabilities. However, where resource utilisation is not optimum, psychiatrists seemed dissatisfied with the process with little success in medication rationalisation. Conclusions: Whereas some psychiatrists are successful and enthusiastic about rationalising antipsychotics, others still face barriers and challenges. Much work is needed to achieve a uniformly positive outcome throughout the United Kingdom. [ABSTRACT FROM AUTHOR]

Summary: Antiseizure medications (ASMs) are the second most widely prescribed psychotropic for people with intellectual disabilities in England. Multiple psychotropic prescribing is prevalent in almost half of people with intellectual disabilities on ASMs. This analysis identifies limited evidence of ASM benefit in challenging behaviour management and suggests improvements needed to inform clinical practice. [ABSTRACT FROM AUTHOR]

Introduction: The PERMIT study is the largest pooled analysis of perampanel (PER) clinical practice data conducted to date. Methods: This post-hoc analysis of PERMIT investigated the effectiveness, safety and tolerability of PER when used as early add-on therapy (after failure of one or two previous antiseizure medications) in comparison with late add-on therapy (after failure of three ormore previous antiseizuremedications). Retention and effectiveness were assessed after 3, 6, and 12 months, and at the last visit (last observation carried forward). Effectiveness was assessed by seizure type (total seizures, focal seizures, generalized tonic-clonic seizures [GTCS]) and assessments included seizure freedom rate and responder rate. Safety and tolerability were assessed by evaluating adverse events (AEs) and discontinuation due to AEs. Results: The Full Analysis Set included 1184 and 2861 PWE treated with PER as early and late add-on therapy, respectively. Compared to the late add-on subgroup, the early add-on subgroup was characterized by later mean age at epilepsy onset, shorter mean duration of epilepsy, lower rates of intellectual disability and psychiatric comorbidity, and lower frequency of seizures per month, suggesting a less severe form of epilepsy in this subgroup. After 12 months, retention was significantly higher in the early versus late add-on subgroup (67.7% vs. 62.4%; p=0.004). At the last visit, responder rates in the early versus late add-on subgroup were significantly higher for total seizures (68.2% vs. 39.3%; p < 0.001), focal seizures (65.0% vs. 36.8%; p < 0.001) and GTCS (83.7% vs. 67.2%; p < 0.001), as were seizure freedom rates (total seizures, 35.9% vs. 11.9% [p < 0.001]; focal seizures, 29.4% vs. 8.7% [p < 0.001]; GTCS, 69.0% vs. 48.1% [p < 0.001]). Incidence of AEs was significantly lower in the early versus late add-on subgroup (42.1% vs. 54.7%; p < 0.001), as was the rate of discontinuation due to AEs over 12 months (15.0% vs. 18.1%; p = 0.031). Discussion: This study demonstrated that PER was effective and generally well tolerated when initiated as early or late add-on therapy, but it was significantly more effective and better tolerated when initiated early. These findings support PER's use as a broad-spectrum, early add-on therapy for use in PWE with focal and generalized seizures. [ABSTRACT FROM AUTHOR]

Objectives: Intellectual disability (ID) and epilepsy are independent risk factors for osteoporosis. Diverse predisposing factors influence this, for example in ID, genetics and poor nutrition and in epilepsy, anti‐seizure medication (ASM). Around 25% people with ID have epilepsy, majority treatment resistant. ASMs polypharmacy is common. However, little is known about the bone‐related characteristics of this vulnerable group. A prospective observational cohort study of bone profile across a community ID Epilepsy service was undertaken to understand this. Materials & Methods: Participants were on minimum 2 years of ASMs. Baseline demographics, epilepsy data, bone metabolism biomarkers, bone mineral density (BMD) and vitamin D levels were collected. Doses needed to correct vitamin D insufficiency/deficiency were calculated. Results: At baseline, of 104 participants, 92 (90.2%) were vitamin D insufficient/deficient. Seventy‐six (73.1%) had a DEXA scan, 50 of whom—in the osteopaenic/osteoporotic range. DEXA scores between ambulant and non‐ambulant patients were significantly different (p =.05) but not for ID severity. A high alkaline phosphatase (ALP) predicted lower vitamin D levels. Borderline significance (p =.06) in calcium levels between normal and high ALP was identified. There were no significant associations between parathyroid hormone, inorganic phosphate and magnesium levels, with vitamin D status or DEXA hip T‐scores. Normalizing vitamin D levels (mean 101.4 nmol/L) required an average of 1951IU cholecalciferol daily. Conclusions: Vitamin D deficiency is highly prevalent in people with ID and epilepsy treated with ASMs impacting likely on their bone health. Screening with vitamin D levels, ALP and DEXA in this group should be pro‐actively and routinely considered. [ABSTRACT FROM AUTHOR]

Background: A quarter of people with Intellectual Disability (ID) in the UK have epilepsy compared to 0.6% in the general population and die much younger. Epilepsy is associated with two-fifths of all deaths with related polypharmacy and multi-morbidity. Epilepsy research on this population has been poor. This study describes real-world clinical and risk characteristics of a large cohort across England and Wales. Methods: A retrospective multi-centre cohort study was conducted. Information on seizure characteristics, ID severity, relevant co-morbidities, psychotropic and antiseizure drugs (ASDs), SUDEP and other risk factors was collected across a year. Results: Of 904 adults across 10 centres (male:female, 1.5:1), 320 (35%) had mild ID and 584 (65%) moderate-profound (M/P) ID. The mean age was 39.9 years (SD 15.0). Seizures were more frequent in M/P ID (p < 0.001). Over 50% had physical health co-morbidities, more in mild ID (p < 0.01). A third had psychiatric co-morbidity and a fifth had an underlying genetic disorder. Autism Spectrum Disorder was seen in over a third (37%). Participants were on median two ASDs and overall, five medications. Over quarter were on anti-psychotics. Over 90% had an epilepsy review in the past year but 25% did not have an epilepsy care plan, particularly those with mild ID (p < 0.001). Only 61% had a documented discussion of SUDEP, again less likely with mild ID or their care stakeholders (p < 0.001). Conclusions: Significant levels of multi-morbidity, polypharmacy and a lack of systemised approach to treatment and risk exist. Addressing these concerns is essential to reduce premature mortality. [ABSTRACT FROM AUTHOR]

An area of interest presently is the lingering symptoms after COVID-19, i.e. post-COVID-19 syndrome (PCS). Specifics of diagnosis and management of PCS are emerging. However, vulnerable populations such as those with intellectual disabilities, who were disproportionately affected by the pandemic, risk being 'left behind' from these considerations. [ABSTRACT FROM AUTHOR]

1 People with mild intellectual disability (ID) experience a higher prevalence of mental health (MH) problems in comparison to the general population, yet there is little consensus on the most appropriate type and nature of services for support and treatment for this specific group of individuals. The objective of this scoping review is to explore the current evidence for the organization, structure, and delivery of mental health services for people with mild ID. The PRISMA-SCr (Preferred Reporting Items for Systematic reviews and Meta-Analyses extension for Scoping Reviews) checklist was followed. Online databases were used to identify systematic reviews, meta-analyses, scoping reviews, or guidelines published between 2003 and 2020. Articles were reviewed using Roever & Zoccai criteria for critical appraisal of systematic reviews and meta-analyses. 130 records were identified, of which 91 were longlisted. Of these, 28 articles were shortlisted after review of abstracts prior to review of full-text papers. The review included 11 studies: one meta-analysis, eight systematic reviews, and two scoping reviews. These studies approached the provision of mental health services for individuals with mild ID from various angles – including service organization and access, therapies, and patient feedback. According to the Roever & Zoccai criteria, there was a lack of high-quality evidence, which limited the findings and conclusions. The available evidence suggested that despite higher levels of psychopathology there is not a corresponding consideration in care for individuals with mild ID in general psychiatric services. There was no conclusive evidence on better level of services or outcomes being provided either by the general psychiatric services or specialist ID psychiatric services. Some evidence was found for intensive case management and assertive outreach for individuals with mild ID, but this was not replicated in further studies. In terms of treatment, there was no high-quality evidence found for pharmacological interventions, with some limited evidence around psychological therapy for the treatment of depression in this vulnerable population. Overall, it was found that an increase in staff training would be beneficial in terms of timely access to services and appropriate treatment. There is a need for inclusive, evidence-based guidance as regards service development for people with mild ID and MH problems. Abbreviations: ID: intellectual disability; MH: mental health; CBT: Cognitive Behavioral Therapy; RCT: randomized controlled trial; ACT: assertive community treatment; ECT: electroconvulsive therapy [ABSTRACT FROM AUTHOR]

Background: A quarter of people with intellectual disability (ID) have epilepsy, compared to approximately one in a hundred across the general population. Evidence for the safe and effective prescribing of antiepileptic drugs (AEDs) for those with ID is, however, limited. Aims of Study: This study seeks to strengthen the research evidence around Eslicarbazepine Acetate (ESL), a new AED, by comparing response of individuals with ID to those from the general population who do not have ID. Methods: A single data set was created through retrospective data collection from English and Welsh NHS Trusts. The UK‐based Epilepsy Database Research Register (Ep‐ID) data collection and analysis method were used. Results: Data were collected for 93 people (36 ID and 57 'no ID'). Seizure improvement of '>50%' was higher at 12 months for 'no ID' participants (56%), compared to ID participants (35%). Retention rates were slightly higher for those with ID (56% compared to 53%). Neither difference was significant. Conclusions: Tolerance and Efficacy for ID and 'no ID' people in our data set were similar. Seizure improvement and retention rates were slightly lower than that found in other European data sets, but findings strengthen the evidence for the use of ESL in the ID population. [ABSTRACT FROM AUTHOR]

Background: Valproate (VPA) is a known teratogen associated with greater risk of major congenital malformations and other neurodevelopmental sequelae than all other licensed antiepileptic medicines. To reduce the potential for VPA‐related teratogenicity, the European Medicines Agency issued recommendations in 2018. Over two‐thirds of women/girls with intellectual disability (ID) may have treatment‐resistant epilepsy that could benefit from VPA treatment. Aims: This investigation compared VPA prescribing practice for women/girls with ID between European countries, specifically evaluating the practice in the UK with that in other countries. Methods: An expert working group with representation from key stake‐holding organizations developed a survey for dissemination to relevant professionals across Europe. Results: Seventy one responses were received (27 UK, 44 Europe). Clinicians in the UK were more likely to report that they are working to mandatory regulations compared with European respondents (P =.015). European respondents were less likely to be aware of user‐independent contraception options (P =.06). In The UK, VPA regulations were more likely to be applied to women with ID than in Europe (P =.024). Conclusion: There is heterogeneity in the application of VPA regulations across Europe for women/girls with ID. In both the UK and Europe, the regulations lack suitable adjustments for specific ID‐related factors. [ABSTRACT FROM AUTHOR]

Having a diagnosis of Down syndrome (DS) is associated with intellectual disability (ID), pervasive developmental disorders and Alzheimer's dementia (AD). The association between these conditions has not been well evaluated. This paper looks to examine the current evidence pertaining to the relationship between dementia in people with DS and severity of ID and the presence of pervasive developmental disorders. A scoping review using PRISMA guidance was undertaken. Medline, Cochrane database, NHS evidence, Trial registers and Open Grey were searched in December 2018 and an updated search was completed in July 2020. Three search strategies were used to retrieve articles relating to DS, dementia, pervasive developmental disorders (including autism, autism spectrum disorder (ASD) and attention-deficit hyperactivity disorder (ADHD)) and severity of ID. Studies were included if they met the pre-defined inclusion criteria of investigating an association between autism/ASD, ADHD, or severity of ID and the development of dementia in people with DS. Studies were excluded if they did not include primary data, if the population included non-Down causes of ID, or if no specific outcome measure related to comorbid autism/ASD, ADHD, or severity of ID and dementia in people with a diagnosis of DS were reported. There were no exclusions related to study design. Papers were assessed for quality using the Mixed Methods Appraisal Tool (MMAT). The search identified 15 papers, publishing results from 12 studies, relating to severity of ID, DS and dementia. No papers were identified relating to pervasive developmental disorders, DS and dementia. There is limited evidence on how severity of ID impacts on the presentation, diagnosis, management or prognosis of dementia in people with DS. However, no evidence was found on comorbid pervasive developmental disorders, DS and dementia. This paper has identified multiple areas for future research. There is an urgent need for longitudinal studies into the presentation, development and progression of dementia in people with DS ensuring the severity of ID and comorbid pervasive developmental conditions are captured regularly to understand their influence on the dementia etiology and outcome. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

Recent publication of the Medicines and Healthcare products Regulatory Agency (MHRA) in the United Kingdom has strengthened the regulatory measures for valproate medicines. It highlights the importance of making women of childbearing age with epilepsy aware of the teratogenic risks of valproate and encourages the withdrawal of it from those currently prescribed. While a significant directive, it raises concerns of not having considered the impact on special populations such as women with Intellectual Disability (ID). While it is important that women with ID are not excluded from such safety initiatives, due caution needs to be taken on a case by case basis preferably, to ensure their best interests are central to the decision making. Many women with moderate to profound ID cannot have informed consented sexual relationships not to mention cognitive incapability to make informed choices on medication suitability. These women are at potential risk of having their epilepsy control undermined due to the MHRA directives. Around 30% of people with moderate to profound ID have seizures of which 60% are considered treatment resistant. In this vulnerable population changes to medication without clear clinical and social insights could lead to increased harm levels. This paper enumerates the challenges of application of the new directive to these special populations and proposes a pathway based on individual cognitive ability to provide informed consent to facilitate the continuation or removal of valproate. It is important not to lose sight of individual circumstances and the importance of working collaboratively toward providing person center care. [ABSTRACT FROM AUTHOR]

BONE HEALTH IN PEOPLE WITH INTELLECTUAL DISABILITY Risk factors identified for osteoporosis include use of ASDs (particularly older ones), immobility, and history of falls and fractures. Epilepsy is more prevalent in individuals with intellectual disability (ID) compared to the general population, and this prevalence increases with increasing severity of ID. Epilepsy affects approximately 22% of people with ID, while 25% of people with epilepsy (PWE) have an ID.[1] Epilepsy is associated with significantly impaired bone health including osteoporosis and bone fractures,[2] while individuals with ID are at increased risk of osteopenia and osteoporosis, and vitamin D deficiency.[3] BONE HEALTH AND EPILEPSY There has been growing interest in the association between abnormalities of bone health and epilepsy in recent years. [Extracted from the article]

This case study describes a method of separating and clarifying the impact that a client's concomitant learning disability, personality disorder, bipolar affective disorder and post-traumatic stress each had on her capacity to make decisions and take responsibility. This information was then used to plan an effective management strategy. INSET: Case study. [ABSTRACT FROM AUTHOR]

• First study of use of oromucosal midazolam maleate (OMM) in adults in community. • Oromucosal midazolam maleate is safe to use by trained non-clinical carers. • 10-mg dose of OMM is effective for cessation of seizure in adults at status risk. • Oromucosal midazolam maleate is an effective rescue medication in adults with epilepsy in community settings. Oro-mucosal midazolam maleate (OMM) with suitable training to family and carers is being increasingly recognized as the treatment of choice to mitigate the development of status epilepticus in non-hospital community settings. There are no studies to describe the use, effectiveness, and suitable dosing of OMM in adults with epilepsy in community settings. To describe the use, effectiveness, and dosing of OMM in the emergency treatment of epileptic seizures in community settings. A retrospective observational study (2016–17) design was used with participant recruitment from four UK NHS secondary care outpatient clinics providing epilepsy management. Study sample was of adult people with epilepsy (PWE) having had a recent seizure requiring OMM. Data on patient demographics, patient care plans, details of a recent seizure requiring emergency medication, and dose of OMM were collected from medical records. Study data from 146 PWE were included. The mean age of PWE was 41.0 years (SD 15.2) and mean weight was 64.8Kg (SD 18.2). Fifty-three percent of PWE were recorded as having intellectual disability. The most frequently used concomitant medications were lamotrigine (43%). The majority of seizures occurred at people's homes (n = 92, 63%). OMM was most often administered by family/professional care-givers (n = 75, 48.4%). Generalized (tonic/clonic) seizures were recorded in most people (n = 106, 72.6%). The most common initial dose of OMM was 10 mg (n = 124, 84.9%). The mean time to seizure cessation after administration of this initial dose was 5.5 minutes (SD = 4.5, Median 5.0, IQR 2.1–5.0). Only a minority of seizures led to ambulance callouts (n = 18, 12.3%) or hospital admissions (n = 13, 9%). This is the first observational study describing the use and effectiveness of OMM in adults in community settings. Minimal hospital admissions were reported in this cohort and the treatment was effective in ending seizures in adults in community settings. [ABSTRACT FROM AUTHOR]