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Purpose This study provides further insight into the experiences of five men who have committed sexual offences, with intellectual disabilities and have been recalled back to prison. The purpose of this paper is to increase professional knowledge to assist with improving working practices that support the reintegration of individuals convicted of sexual offences and with intellectual disabilities, back into the community. Design/methodology/approach Interview data was analysed using interpretative phenomenological analysis, to identify the key issues associated with criminal justice services. Findings The following superordinate themes were identified: “The label that sticks” and “Probation officer dependency”. Research limitations/implications The key implications of the findings were the high level of dependency individuals had on their probation officers and the impact that this relationship had on the overall experience of recall. The stigma of the label “sex offender” was also found to have a profound impact on individuals’ feelings of safety and their future progression. Originality/value Research exploring the experiences of individuals convicted for sexual offences and with intellectual disabilities, being recalled back to prison, is limited. Future recommendations of how practice could be improved to better support responsivity needs of this group and to create a more positive self-identity are discussed.

Purpose Although it is recommended that reflective practice groups (RPGs) are used to support staff in inpatient intellectual disability (ID) services, there is to date no research on their effectiveness or how staff perceive RPGs in these settings. This paper aims to evaluate staff perceptions of the RPGs in an assessment and treatment unit for people with ID and to ascertain the nature of any barriers for staff in attending the group. Design/methodology/approach Thirteen staff completed questionnaires ascertaining their views on the purpose, process and impact of the RPG run within the service. Questionnaires included a version of the clinical supervision evaluation questionnaire (CSEQ; Horton et al., 2008) adapted for this context and a questionnaire designed by the authors examining barriers to attending the group. Findings Staff responses indicated that they valued the group and perceived it as improving their clinical practice and their self-awareness. Staff did not always perceive group sessions as having clear aims and did not perceive the group as enhancing their well-being or their awareness of gaps in their skills. RPGs may be most effective if they form part of a service-wide approach to staff support and development. Originality/value To the best of the authors’ knowledge, this is the first evaluation of RPGs in inpatient ID services. The adapted CSEQ was found to be an easily implemented method of evaluating RPGs in an inpatient ID setting.

Purpose The assessment for and diagnosis of personality disorder (PD) continue to be contentious, with many prominent practitioner psychologists arguing against this specific label and providing a credible alternative framework to psychiatric diagnosis more generally. This paper aims to summarise the literature and support practitioners identifying PD in people with intellectual disabilities (ID). Design/methodology/approach Relevant National Institute for Health and Care Excellence (NICE) guidance and literature were reviewed to provide a service position on the assessment and diagnosis of PD in people with ID. Findings For people with intellectual disabilities, the PD label can be even less robustly applied and may be even more pejorative and obstructive. That said, there are people for whom a PD diagnosis has clear clinical utility and opens access to suitable specialist services. Practical implications Evidence suggests that a diagnosis of PD can be both facilitative and obstructive, and the assessment and diagnosis process should, therefore, be undertaken with caution. Originality/value This paper presents an account of NICE guidance and evidence on the assessment and diagnosis of PD in people with intellectual disabilities.

Purpose This narrative review aims to examine how trans people with intellectual disabilities are perceived and discussed in the academic literature. Design/methodology/approach A narrative review was carried out to better understand the positioning of people with intellectual disabilities who identify as trans. Findings There was a lack of clear terminology, an over medicalization of both people with intellectual disabilities and trans people and evidence that identifying with a non-conforming gender identity was seen as a problem by services. Services need to be better informed about issues around gender identity so that they are able to better support trans people with intellectual disabilities. Originality/value To the best of the authors’ knowledge, no previous literature review has focused only on trans people with intellectual disabilities.

Purpose The use of anti-dementia medication in people with intellectual disabilities has been controversial and requires additional research to assess the efficacy of such medications. An essential part of this treatment (both in terms of research and clinical practice) is having robust outcome measures to assess the efficacy of these medications for individuals. Currently there is no consensus in the UK regarding which outcome measures, in conjunction with clinical judgement, are effective in informing clinicians’ decision-making regarding anti-dementia medication management and this paper aims to present useful outcome measures. Design/methodology/approach A comprehensive literature search was conducted to identify relevant outcome measures. Outcome measures focused on aspects of patients’ presentation such as cognition, activities of daily living, neuropsychiatric presentation or the impact of their presentation (either on themselves, or on others). These outcome measures were critically appraised to ascertain their suitability in informing clinician’s decisions regarding management of anti-dementia medication. The focus of this appraisal was on good quality measures that are practical and accessible and can be easily used within clinical NHS services. Findings This paper provides advice for clinicians on using appropriate outcome measures, depending on patients’ presentations and the symptoms of dementia being targeted, that can be used alongside their clinical assessment to enhance their anti-dementia medication management. Two case studies are presented to illustrate the use of such outcome measures. Originality/value The case for using a range of assessments that are both broad in focus, and those specifically selected to measure the areas of functioning targeted by the anti-dementia medication, is presented.

PurposeThe high and persistent unemployment rates of people with intellectual disabilities (PwID) reveal the wide gap that still remains to be bridged. Entrepreneurship combinedly with a high enterprising tendency could improve PwID's life satisfaction.Design/methodology/approachA mixed-method approach was used, based on questionnaires and structured face-to-face interviews on 37 PwID who had recently become entrepreneurs. Data were firstly quantitatively analyzed using partial least squares-structural equation modelling (PLS-SEM), and qualitative data were used to enable robust findings.FindingsThe entrepreneurial tendency of PwID who had recently become entrepreneurs was found to be a positive to their life quality (LQ), job satisfaction and life satisfaction.Research limitations/implicationsThis study revealed that entrepreneurship among PwID who had high enterprising tendency enhances their LQ, job satisfaction and life satisfaction. However, further research could evaluate whether becoming an entrepreneur is in itself enough to change PwID's life to better, such that a comparison could be done between PwID who become entrepreneurs and PwID who have a salaried job.Practical implicationsNew aspects in the design of public social policies to improve PwID's life satisfaction are suggested. These include the facilitation of both entrepreneurship and enterprising tendency for PwID to enhance their life satisfaction.Originality/valueThere are very few occasions in which PwID set up businesses. This is one of the first studies to analyze the benefit of entrepreneurship and enterprising tendency on the LQ, the satisfaction at work and the life satisfaction of PwID.

Purpose As Clinical Psychologists working in a tertiary Intellectual Disability (ID) service in the UK, this paper aims to address the impact of Covid-19 – and the subsequent transition out of Covid-19 restrictions – on individuals with an ID, and the clinicians working alongside them. Additionally, the paper reflects upon how Covid-19 has shaped and manipulated therapeutic communities and environments. Design/methodology/approach This paper is reflective in nature and reviews current evidence associated with how people with an ID experienced the impact of Covid-19. Clinicians reflect upon their shared experience in line with this evidence. Findings This paper highlights perpetuating inequalities and injustices on people with an ID as a result of Covid-19. Further, it is indicated that that there should be consideration of how people with an intellectual disability experience transitions back to their day-to-day environments and encourages clinicians to widely consider how to shape therapeutic communities and environments. Originality/value Multiple themes have been addressed in this paper, and the reflections add to an understanding of how those individuals specifically working in, or using intellectual disability services, have experienced the Covid-19 pandemic, though a critical lens.

Purpose This paper aims to discuss the barriers that people with intellectual disabilities face to come out as transgender in the context of a paucity of research with or about this group. Design/methodology/approach The commentary and brief overview of trans participation in literature on people with intellectual disabilities presented in this paper is informed by a Queer Theory and Critical disabilities Studies approach. Findings Researchers in this area are correct that there is insufficient literature that addressed the experiences of trans people with intellectual disabilities; however, for trans people with intellectual disabilities to be involved in research they must first be safe to self-identify and come out in their communities and services. Existing research suggests that people with intellectual disabilities may face additional barriers to self-identifying as LGTBQ, and that for those who have claimed a trans identity, it is not safe to come out. Social implications There is a need for researchers and professional and lived experience experts to be engaged in policy and social research with the aim of creating safe spaces and communities for people with intellectual disabilities to explore and affirm their gender. Originality/value There are no published papers that redirect focus from a paucity of research into the experiences of trans people with intellectual disabilities towards addressing why trans people with intellectual disabilities may choose not to come out in a context of hostility towards transgender identity in disabilities services.

Purpose The purpose of this study was to explore the views of psychologists working in community teams for people who have intellectual disabilities (ID) on the provision of psychological therapies to those with ID and autism spectrum disorder (ASD). Design/methodology/approach Semi-structured interviews were carried out with seven clinical psychologists working across a large geographical area. Interviews concerned the accessibility and effectiveness of psychological therapies. These were transcribed and analysed thematically. Findings Participants expressed concern about lack of access to mainstream services, the lack of visibility of their service and the suitability of the physical space to deliver therapy. They were positive about the effectiveness of therapy but emphasised the importance of adaptations and managing expectations. Research limitations/implications There is a lack of research in this area, and further research is needed with service users to develop a fuller understanding of their needs. Practical implications Consideration needs to be given on how to optimally deliver psychological therapies for this group. This will need services to become more flexible and focussed on the needs of this group of service users. Originality/value This paper provides insights into the views of psychologists on providing psychological therapy to people who have autism and ID.

Purpose People with intellectual disabilities are not routinely involved in the assessment of their behaviours that challenge, as this is often completed by a proxy respondent and the health-care professional. This is contrary to guidance stating that everyone should be involved in the planning of their care. This paper aims to show how health-care professionals can support people with intellectual disabilities to engage in the assessment of their behaviours that challenge and the subsequent development of their own positive behaviour support (PBS) plans. Design/methodology/approach A non-systematic review of the existing literature on improving the engagement of people with learning disabilities in health-care planning, and specifically PBS planning, was undertaken. Appropriate papers were included in this paper. Findings There are several evidence-based methods to improve people’s engagement in the assessment of their own behaviours that challenge and then the development of their PBS plans. These methods are discussed in terms of their application to supporting people to communicate and involving them in the process of developing a valid and meaningful PBS plan. This is a relatively new focus within the literature, and further research should focus on increasing engagement in the process, as well as monitoring how co-production affects PBS outcomes. Originality/value This paper summarises some of the approaches used to support people with intellectual disabilities to engage in the assessment of their behaviours that challenge and the development of their own PBS plans. This should encourage health-care professionals to consider how to use alternative and augmentative communication strategies to facilitate co-production in their own clinical practice.

Purpose This paper aims to describe three dementia assessment services for people with intellectual disabilities to provide professionals with insight into planning this type of service. Design/methodology/approach Three services in England were contacted via email and telephone to collect data on their service provision. They were asked about the average age of individuals when receiving a baseline assessment, frequency of follow-up assessment, assessment instruments used and descriptive aspects of their services. Findings All three services offered proactive dementia assessment services to people with Down's syndrome (DS), with one service providing systematic screening via the GP. None offered proactive screening to people with intellectual disabilities who did not have a diagnosis of DS. All offered reactive assessment to this population if they experienced a decline in function. Services differed in terms of age at which baseline assessments were offered, frequency of follow-up and instruments used. Originality/value To the best of the authors’ knowledge, this is the first paper to compare dementia assessment provision between different services in England.

Purpose The purpose of this paper is to provide a commentary on Banks et al. and sets the wider context. Design/methodology/approach It provides a brief narrative review of the literature on the factors that determine the quality of life of people with intellectual disabilities, including the impact of culture. Findings Key to ensuring good quality of life outcomes is support that is facilitative, enabling and empowering which can compensate for severity of disability and improve people’s experiences. This approach is called Active Support. Improving quality of life is a key part of preventing and responding to behaviours that challenge. Culture is an important factor in ensuring staff are motivated to work in such ways but is likely to be intertwined with many other factors. Originality/value This paper summarises the key literature on what is needed to improve outcomes for people with intellectual disabilities. It introduces the importance of exploring how the different dimensions of culture interact and how culture, practice, processes and structures might work in a much more complex and intertwined fashion than previously conceptualised.

Purpose The COVID-19 pandemic meant that it became impossible for many individuals with intellectual disability to access specialist mental health support. The purpose of this study was to evaluate a set of guided self-help resources adapted for delivery on an outreach basis. Design/methodology/approach The use and impact of the resources were evaluated through: data about downloads and requests for printed materials; interviews with individuals who used the resources; webinars with organisations; family members and support workers who had delivered the resources and an online survey with individuals who had delivered the resources. Findings The resources had considerable reach, with over 12,555 printed copies requested from across Scotland. The materials were perceived to be relevant and useful, helping individuals to talk about difficulties and to be aware that others were facing similar challenges. Originality/value The findings highlight the potential long-term value of guided self-help resources to help promote well-being that can be delivered on an outreach basis by family members and social care organisations.

Purpose The purpose of this paper is to broaden the discussion on some of the barriers and solutions for co-production in positive behaviour support (PBS) planning as identified in the paper “Including people with intellectual disabilities in the development of their own Positive Behaviour Support Plans”. Design/methodology/approach Drawing on the literature associated with co-production in PBS planning, this commentary will reflect on the wider systems and culture needed to enable successful implementation of this way of working. Findings Co-production in PBS planning is recommended as part of best practice guidelines. However, there is limited research in the area of co-production with regards to PBS and use of augmentative and alternative communication methods. Collaboration among speech and language therapy and PBS practitioners is an important factor for co-production to achieve the best outcomes for people with learning disabilities who display behaviours of concern. Along with identifying a range of communication tools/strategies needed for PBS assessment/planning, it also requires a whole systems approach and culture shift to ensure the necessary foundations are in place. Originality/value Co-production in PBS planning remains an under practiced way of working. This commentary builds on the barriers and solutions identified for co-production and provides further insight into what might be needed to achieve this in health and social care settings.

Purpose This paper aims to systematically review the available evidence that explores adverse childhood experiences (ACEs) in people with intellectual disabilities (PwID). It is important to systematically review this literature as, to date, there is little known about the number of studies in this area, despite the World Health Organization declaring ACE prevention and support as a global public health priority. Design/methodology/approach Published studies were identified from electronic database searches. Key journals and reference lists were also hand searched. Findings Two studies met the inclusion criteria and the prevalence and frequency of ACEs experienced by participants of these studies analysed. Overall, due to the small number of studies meeting the inclusion criteria, it is difficult to establish any meaningful conclusions. Originality/value This appears to be the first systematic review to try and identify a research base looking at the prevalence of ACEs within a PwID population. Findings suggest that this is a highly neglected area of research, and the authors hope to have identified that further evidence is required to draw clearer conclusions about the impact of ACEs on PwID.

Purpose Research into culture within intellectual disability services, has predominantly focussed on small group homes in Australia. The current investigation aimed to explore the transferability of the dimensions of culture identified in the literature, to a residential Intellectual Disability service in the UK. The purpose of this study was to better understand the impact of informal culture upon the behaviour of direct care staff, particularly around managing behaviour that challenges. Design/methodology/approach Semi-structured interviews were conducted with direct care staff. Interview transcripts were analysed thematically using template analysis. Findings Themes regarding leadership, perceptions of managers, team functioning, and relationships between direct care staff and service users, were identified, corroborating the existing literature. Additional themes relating to being aware of the risks posed by service users, and the emotional impact of behaviour that challenges, also emerged. Originality/value To the best of the authors’ knowledge, this is the first qualitative study to explore informal culture within a community residential Intellectual Disability service in the UK.

Purpose This commentary aims to define STOMP and STAMP, describes its history and evolution and the authors’ thoughts about future directions given the lack of clear evidence base for prescribing and deprescribing psychotropic medication given for behaviour thought to be challenging. Design/methodology/approach This commentary defines the authors’ clinical experience and personal thoughts about STOMP achievements and challenges for the future delivery. Findings This commentary details STOMP development to date and highlights the potential areas for further study and research to grow understanding, professional confidence and delivery. Research limitations/implications This commentary highlights much of the currently accepted research and areas that have poor quality evidence or are of interest for future study. STOMP definition, especially of inappropriate prescribing, is key to redefining the work. Practical implications This commentary highlights the potential impact of STOMP and STAMP on prescribing rates and the need for better definition, processes and education for workforce development. There is a major need to understand the benefit of behavioural intervention to support the optimisation of medication. Originality/value This commentary builds on personal experience and current understanding to postulate considerations to further the delivery of STOMP and STAMP.

Purpose Care pathways are being increasingly used in the national health service to outline an anticipated programme of care in relation to a particular illness, condition or set of symptoms. The purpose of this paper is to inform those using the service of what they might expect within what time frame. They are designed to reduce variation in practice and allow optimal quality of care across a variety of care settings. Care pathways map out a patient’s journey, providing coordination of services for users. They aim to have: “the right people, doing the right things, in the right order, at the right time, in the right place, with the right outcome”. Design/methodology/approach This paper outlines care pathways in relation to people with intellectual disabilities who present with behaviour that challenges. Findings It is likely that many people will have a lifelong need for support, so discharge from clinical services should only be considered if it is genuinely appropriate. Reductions in a person’s behaviours that challenge are likely to be a consequence of changes that have been made to the person’s environment and supports. Therefore, any reductions in the level or type of support that the person receives may lead to an escalation of the behaviour again. Originality/value Standards in relation to care pathways are presented.

Purpose Mental health courts (MHCs) may enable better support for people with intellectual disabilities (ID) within the criminal justice system (CJS) but little evaluative empirical evidence is available regarding their operation. The purpose of this paper is to explore professional perceptions of the challenges of including people with ID in a targeted services court (TSC) designed for people with mental health issues and ID. Design/methodology/approach Information was gathered, via interviews and focus groups, from 46 professionals working with people with mental health issues and ID within the TSC. Data were analysed by using thematic network analysis. Findings Findings highlight the neglect and lack of inclusion of people with ID within the TSC processes, with challenges in identifying people with ID, stakeholder awareness, inconsistent adapting of practices for people with ID and information transfer underpinned by the involvement of numerous organisations with differing agendas. Research limitations/implications Although valued, development of a TSC, including people with ID, was a challenging endeavour and may reflect societal and institutional neglect of people with ID, recommendations are provided. Originality/value This study adds to the few investigations that have considered the process of including people with ID in a TSC from the perspective of those working in the CJS.

Purpose Narrative therapy has been suggested as particularly relevant to people with intellectual disability (ID), with group formats potentially offering additional benefits. This paper aims to critically review studies which evaluated narrative group interventions for people with ID. Design/methodology/approach The seven papers identified for review were critically appraised for their quality using a quality appraisal tool appropriate to their design, along with additional factors including adaptations made to improve accessibility. Findings The studies suggest that there may be some small benefits of narrative group therapy for those with ID. However, alongside issues limiting the studies’ evaluations, it is noted that the research paradigms used in the studies conflict with narrative approaches. Research limitations/implications The limited evidence base suggests the need for further research. The randomised controlled trial would ordinarily be seen as the gold standard for such research. However, narrative interventions may require a different approach to evaluation. Originality/value This is the first review of published literature on the evaluation of narrative therapy groups for people with ID.

Purpose Recent guidelines from the National Institute of Health and Care Excellence highlight that service users (SUs) with intellectual disabilities and co-occurring mental health problems rarely get the opportunity to share their experiences of mental health services. Over the past 20 years, policy documents have stated that these individuals (SUs) must be included in decisions about their care. Research suggests that often this is not the case. Therefore, this paper aims to create a space for SUs to share their experiences of mental health services, and what they found helpful. Design/methodology/approach A focus group was held with five SUs, two psychologists and two researchers. The audio recording of the discussion was transcribed and analysed using thematic analysis. Findings Three main themes were identified, namely, “relationships with others”, “inclusion and communication” and “challenges”. This focus group highlighted that although some SUs felt supported, they reported having little control in their lives and wanted to be listened to. Research limitations/implications Including a SU in the planning and facilitation of the focus group would have made this research more inclusive. Practical implications The implications of this research suggest that by listening to and involving SUs and developing more person-centred services, recovery rates may increase as the services provided would be more targeted. Originality/value Very little research has previously been conducted to explore SUs’ experiences. This paper highlights the value of being heard and the knowledge that is often lost if the authors do not take the time to listen to the people for whom a service is designed.

Purpose The purpose of this paper is to provide a commentary on the article regarding online risk for people with intellectual disabilities (ID). Design/methodology/approach This commentary is a reflection based on clinical practice and a recent pilot research study. Findings How we provide information is important both online and in training to keep people safe. Practical implications Information provision needs to consider content and medium alongside the needs of the recipient. Originality/value This paper reinforces the importance of how information is provided for people with ID.

Purpose The purpose of this paper is to summarise the current state of empirical knowledge pertaining to online risk and cybercrime relating to people with intellectual disabilities (ID). Design/methodology/approach This narrative review summarises, synthesises and critically evaluates the current literature and state of knowledge and offers suggestions for extending current knowledge and practice. Findings Evidence regarding risk for people with ID is limited but growing. Existing findings highlight that: risk may increase contingent upon higher levels of sociability, loneliness, anxiety and depression, poorer insight, judgement, discrimination and ability to detect deception online and reduced experience and life opportunities; people without ID perceive high online risk for people with ID, which may lead to gatekeeping restrictions and controlling digital access; restriction may potentially impede online self-determination, participation and development by people with ID; and experience of risk may enhance awareness, independence and resilience in managing future online risk amongst people with ID. Further research work is needed in this area to enhance understanding of risk experience and effective support strategies. Originality/value This review of current knowledge has highlighted the necessity for more research to better understand the propensity for engagement in different risky online behaviours and to better inform support practices to help people with ID to manage risk whilst maintaining digital inclusion.

Purpose Fidelity data in clinical trials are not only necessary for appraising the internal and external validity, but also could provide useful insights how to improve the application of an intervention in everyday settings. The purpose of this paper is to understand the current literature of fidelity measurements in complex interventions for people with intellectual disabilities (ID) and behaviours that challenge. Design/methodology/approach The electronic databases MEDLINE, Embase, PsycINFO, Web of Science and CINAHL Plus were searched for studies published between 1990 to 2017 that have mentioned fidelity in randomised controlled trials of complex interventions for people with ID and behaviours that challenge based on positive behaviour support or applied behaviour analysis principles. The authors also searched the grey literature and reference lists. Findings Five randomised controlled trials were included in the review. The authors found variable and inconsistent fidelity measurements reported in the studies. The most frequently provided fidelity elements found in four out of five studies were adherence of implementation, dose and some aspects of quality of delivery. Research limitations/implications Research recommendations for a standardised approach of measuring fidelity in such studies are suggested. Originality/value The first review of such type that confirms the paucity of research measuring fidelity in complex interventions in this population.

Purpose Children and young people with comorbid intellectual disabilities (ID) and autism spectrum disorders (ASD) are more likely to exhibit comorbid mental health disorders (MHD) and other significant behaviours (SB) in addition to the core symptoms of ASD. The purpose of this paper is to identify the prevalence of comorbid MHD and behaviours in children and young people with ID and ASD in Egypt. Design/methodology/approach The Reiss scale for children’s dual diagnosis was administered by parents and teachers of 222 Egyptian children and young people with mild/moderate ID and ASD to screen for MHD and SB. The mean age of children and young people was 12.3 years (SD = 3.64), with 75.6 per cent male. Findings The results revealed that 62.2 per cent of children and young people with ID and ASD had high rates of comorbid MHD and behaviour disorders were shown in 64.4 per cent of the participated children and young people. The results identified anger, anxiety and psychosis being the most frequently diagnosed disorders while crying spells and pica were the most SB. No differences were found between the male and female with ID and ASD in the current study. Research limitations/implications Mental health assessment of children and young people with ID and ASD will help to highlight the needs of these vulnerable children and develop the appropriate services. Originality/value The findings highlight the prevalence of MHD in children and young people with ID and ASD in Egypt. This has implications on the assessment of comorbid disorders and services needed for children with ID and ASD in Egypt.

Purpose Elucidating where antisocial or violent behaviour arises within the life course of individuals with intellectual disability (ID) could improve outcomes within this population, through informing services and interventions which prevent behaviours reaching a forensic threshold. The paper aims to discuss this issue. Design/methodology/approach The Historical Clinical Risk Management-20, Version 3 assessments of a cohort of 84 inpatients within a forensic ID service were analysed for this study, with a particular emphasis on items concerned with the age at which antisocial or violence first emerged. Findings For most participants, violent or antisocial behaviour was first observed in childhood or adolescence. The study also highlighted a smaller subgroup, whose problems with violence or antisocial behaviour were first observed in adulthood. Originality/value The study findings suggest that targeted services in childhood and adolescence may have a role in reducing the offending behaviour and forensic involvement of people with ID. This has implications for the service models provided for children and adolescents with ID with challenging or offending behaviour.

Purpose The purpose of this paper is to describe the mental healthcare system for people with intellectual disabilities (ID) in Switzerland. It covers the current provision of mental healthcare services as well as educational and research aspects, and summarises both the historical development and the current data on demography, health economics, legislation and national policy. Design/methodology/approach The authors performed an extensive literature research and evaluated the (very sparse) literature, conducted some interviews with recognised experts and carried out extensive internet-based research on the topic. Findings There are numerous, well-funded, well-staffed and well-equipped facilities for people with ID. These facilities have highly trained special education teachers and social education workers. Legislation, the insurance system as well as the policies and strategies on a national level are basically in line with people’s with ID needs. On the other hand, there are too few specialist physicians and psychologists, not enough training centres and too few specialist psychiatric services, both inpatient and outpatient. Medical and psychological research in this field is also insufficient. Practical implications In Switzerland, the development of treatment facilities typically does not start with a decision by a central authority to implement a policy in a top-down process. Usually, these organisations develop on the basis of some local initiatives and spread throughout the country. The process is likely to be similar in the case of services for people with mental health and intellectual disabilities (MHID), and the situation can be expected to be much better throughout the country within a few years. Furthermore, specific training programmes are expected to be created for physicians and psychologists of various disciplines, to promote an interdisciplinary approach. Originality/value This review fills a gap in that there are very few published reviews on the provision of MHID services in Switzerland.

Purpose The purpose of this paper is to explore the importance of equal access to Improving Access to Psychological Therapies (IAPT) for people with intellectual disabilities. Design/methodology/approach The paper identifies barriers to access and shows how a reference group can work to solve the barriers and increase access. Findings The paper evaluates the authors’ progress to date and how the authors plan to continue to take the work forward. Practical implications The paper highlights some of the factors responsible for the authors’ success and gives information that will be helpful to other areas who are interested in facilitating equal access. Originality/value The paper demonstrates how the focus of a reference group can drive improvements across services to improve access for people with intellectual disabilities to IAPT services.

Purpose The purpose of this paper is to assess the effects of compassion-focussed therapy (CFT) on anxiety in a small sample of adults with intellectual disability. Design/methodology/approach A mixed-methods design was employed. Participants (n=3) completed questionnaire measures of anxiety and self-compassion on three occasions: pre-intervention, post-intervention and, at three months follow-up. Post-intervention, they also took part in recorded interviews that were analysed using interpretive phenomenological analysis. Findings were then synthesised to develop a comprehensive understanding of their overall experience. Findings Final data synthesis revealed five themes: participant anxiety decreased (reliable for all participants); the faulty self; improved positive compassionate attitudes; increased sense of common humanity; and mindful distraction techniques. Research limitations/implications This research paper offers in-depth analysis of three participants’ experiences rather than reporting in less detail about a larger number of participants. The self-compassion scale required considerable support and reasonable adaptation to be used with these clients. Originality/value Only two other studies have explored the use of CFT with people with intellectual disabilities.

Purpose People with intellectual disabilities (ID) can be vulnerable to developing mental health problems. It has been found that participating in regular exercise can help to improve emotional well-being, both in typically developing people and those with ID. The purpose of this paper is to investigate the experiences of community clients with ID who have engaged in a football training programme, and the perceived impacts on attitudes, mood and behaviour. Design/methodology/approach Interviews with seven patients from generic or forensic community ID services were conducted. The transcripts were analysed using interpretative phenomenological analysis. Findings Two master themes were identified from the interviews, “Striving” and “Togetherness”. Originality/value The most important factors related to taking part in the football programme were the social, emotional and personal growth associated with being part of a team and general enjoyment of being part of something. Although aspects of football knowledge and physical fitness were still evident, their impact seemed to be less significant. The experience of football was overwhelmingly positive.

Purpose The purpose of this paper is to provide information for non-specialists on identifying the characteristics, assessment and support needs of people with intellectual disabilities (ID) accessing mainstream services. Design/methodology/approach A review of relevant policy and research literature is supplemented with observations from the authors’ own experience of working in mental health services for people with ID. Findings With change in provision of services the likelihood of mainstream staff encountering someone with ID will increase. However, information on whether a person has ID or their level of ID is not always available to professionals in acute mental health services meeting an individual for the first time. Reliance on observational and interview-based assessments can leave people with ID vulnerable to a range of over- and under-diagnosis issues. This is as a result of difficulties with communication and emotional introspection, psychosocial masking, suggestibility, confabulation and acquiescence. For people with poor communication, carers will be the primary source of information and their contribution has to be taken into account. Practical implications Knowing or suspecting an individual has ID allows staff to take into account the various assessment, diagnosis and formulation issues that complicate a valid and reliable understanding of their mental health needs. Awareness about an individual’s ID also allows professionals to be vigilant to their own biases, where issues of diagnostic overshadowing or cognitive disintegration may be important considerations. However, understanding some of the practical and conceptual issues should ensure a cautious and critical approach to diagnosing, formulating and addressing this population’s mental health needs. Originality/value This synthesis of a review of the literature and observations from the authors’ experience of working in mental health services for people with ID provides an informed and practical briefing for those encountering people with ID accessing mainstream services.

PurposeThe purpose of this paper is to examine guided self-help (GSH), and some of the barriers as to why it is not routinely available for people with intellectual disabilities (IDs).Design/methodology/approachThis paper offers an overview of GSH and the potential benefits of it as an intervention for people with ID with mild depression and/or anxiety.FindingsThe current literature reports the successful use and effectiveness of GSH in the general population. However, despite this there is little evidence that it is being used in practice for people with ID.Originality/valueThis paper offers an overview of GSH and advocates for its increasing use for people with ID to help bring about equality in mental healthcare.

Purpose The purpose of this paper is to determine the relation between quality of life (QoL), mental illness, challenging behaviour and institutionalisation in an adult population with intellectual disabilities (ID). Design/methodology/approach The study assessed the QoL and its conditioning factors in 142 subjects with different degrees of ID. The GENCAT and Quality of Life in Late Stage Dementia scale were used to evaluate QoL, the Psychiatric Assessment Schedule for Adults with Developmental Disability and Diagnostic Assessment for the Severely Handicapped-II scale to assess mental illness and the Inventory for Client and aetiology Planning scale to assess challenging behaviour. Findings Individuals who live in residential care homes were found to have significantly impaired QoL ( Originality/value This paper provides new insight into the importance of challenging behaviour and psychiatric disorders in the QoL of individuals with ID.

PurposeTo develop and implement an educational programme to improve medical students’ attitudes towards intellectual disabilities. The purpose of this paper is to improve the healthcare outcomes for individuals with intellectual disability.Design/methodology/approachThe development of an educational programme involving actors with an intellectual disability as simulated patients. Scenarios were developed involving basic healthcare interactions. The programme was piloted in three sessions with 45 students. A qualitative analysis of student feedback was then used to develop a student attitude questionnaire for completion pre- and post-educational intervention.FindingsThe student attitude questionnaire was completed by 23 different medical students. Two domains were analysed: affect and understanding domain scores, mean difference (95% CI) 3.17(2.41-3.94)ppSocial implicationsStudent feedback reveals significant positive changes in affect and understanding, and an improvement in knowledge and skill levels when interacting with people with an intellectual disability following the educational intervention. Some major institutions now offer comprehensive programmes involving people with intellectual disabilities as tutors, and in the role of simulated patients. However, more needs to be done to encourage the increased participation and good practice for all of tomorrow’s doctors to benefit.Originality/valueFollowing the publication of recent enquiries into the deaths of people with intellectual disabilities. We know that many of these deaths are premature and potentially preventable. The main failing identified repeatedly is that healthcare staff lack of awareness of the needs of people with intellectual disabilities. This emanates from poor quality and limited curricula time dedicated to intellectual disabilities. There is a need to drastically change the approach to teaching about intellectual disabilities to medical students. All the evidence promotes the involvement of people with intellectual disabilities and their careers in designing and delivering this teaching.

Purpose The purpose of this paper is to discuss the role of education and training in addressing health inequalities in intellectual disabilities, before examining innovative approaches to healthcare education. Preliminary findings of a simulation training course to support healthcare professionals to work with people with intellectual disability are then presented. Design/methodology/approach This study employed a mixed methods design to assess the impact of the simulation course. Quantitative data were collected using the Healthcare Skills Questionnaire and a self-report confidence measure; qualitative data were collected using post-course survey with free text responses to open questions. Findings Healthcare skills and confidence showed statistical improvements from pre- to post-course. Qualitative analyses demonstrated that participants perceived improvements to: attitudes, communication skills, reasonable adjustments, interprofessional and multi-disciplinary working, knowledge of key issues in working with people with intellectual disabilities. Practical implications Encouraging findings imply that simulation training to address health inequalities in intellectual disabilities is a valuable resource that merits further development. This training should be rolled out more widely, along with ongoing longitudinal evaluation via robust methods to gauge the impact on participants, their workplaces, and people with intellectual disabilities. Originality/value The authors believe this paper to be the first to assess an interprofessional, high-fidelity simulation course, using actors as simulated patients to address the mental and physical health needs of people with intellectual disabilities. The rigorous use of co-production and co-delivery, alongside promising findings for this training method, represent a useful contribution to the literature.

Purpose – The purpose of this paper is to explore the extent of compliance of commissioners and providers of hospital services in England with their duty under equalities legislation to be aware of patients with intellectual disabilities as a first step to making appropriate provision for their consequent specific needs. Design/methodology/approach – National survey of healthcare commissioners undertaken as part of an annual learning disabilities services audit. Findings – In total, 41.4 per cent of local areas were unable to supply information about numbers of people with intellectual disabilities among those admitted to hospital, 46.7 and 48 per cent, respectively, could not supply this information about out-patient and accident and emergency department attenders. Figures supplied by those able to provide data varied very substantially and overall were so low as to suggest considerable numbers had been missed. Research limitations/implications – The study is testing what local health commissioners are able to find out from hospitals. The authors do not know the accuracy of the data they reported. Practical implications – The study suggests approaching half of healthcare commissioners in England have little or no information about the extent of proper adjustment of hospital care for people with intellectual disability in their area. Their responsibility to assure this has been repeatedly asserted by government. Social implications – The study indicates a need for more work to improve hospital care for people with intellectual disabilities. Originality/value – This was a government sponsored national study to which local healthcare commissioners were expected to contribute.

Purpose – There is a general consensus that healthcare for people with intellectual disabilities should be provided by multi-disciplinary teams. Within a forensic setting, recommendations are often made for separate or “parallel” forensic teams, operating independently of generic mental health or intellectual disability teams. An alternative to this model is an “integrated” service, where specialist forensic clinicians work within the general intellectual disability service, to provide support for clients with forensic needs. For clients with intellectual disabilities and forensic needs, there may be advantages to providing access to a wider multi-disciplinary team, through the application of an integrated model. The purpose of this paper is to illustrate the working of an integrated forensic service within a learning disability team, to identify positive aspects of this model, and how potential shortcomings may be overcome. Design/methodology/approach – Literature review, description of service outline with case example. Findings – Although some studies have compared parallel and integrated forensic models within mental health services, there are no evaluations that compare models of forensic services for individuals with intellectual disabilities. However, specific advantages of an integrated model may include availability of multi-disciplinary clinicians, development of forensic skills across wider groups of clinicians, reduction in stigma and avoidance of delay in transfer of care between services. In addition, in areas with smaller populations, parallel services may not be feasible due to low case numbers. Originality/value – There has been no formal evaluation of parallel vs integrated forensic services within an intellectual disability setting. However, the authors describe a fully integrated service and suggest means by which the potential shortcomings of an integrated model may be overcome.

Purpose– The purpose of this paper is to present the development and evaluation of an original training package for staff members on fire-setting in people with intellectual disabilities. It also included training on functional analysis as a model of formulating the fire-setting behaviour. The quality and effectiveness of the training was assessed and is reported in this paper.Design/methodology/approach– The training was delivered on a ward for people with intellectual disabilities in a UK NHS Trust Low Secure Hospital and was attended by various members of the multidisciplinary team for the ward. The workshop consisted of four modules: theoretical background of fire-setting, the functional analysis model of fire-setting formulation, offence-paralleling behaviours in secure settings and a case study practice. Level of self-reported understanding of the various aspects of the training was measured by an evaluation questionnaire completed pre and post training.Findings– The results of this study showed that following the training there was a significant increase in self-reported understanding of staff members. The participants reported an increase in understanding of fire-setting, functional analysis and formulation of individuals with an intellectual disability and history of fire-setting.Originality/value– This study highlights the potential for staff training to increase awareness of fire-setting behaviours by people with intellectual disabilities. The staff training in formulation would encourage their involvement in development of team formulations and may subsequently increase their understanding of such individuals.

Purpose – The purpose of this paper is to describe the views and experiences of Improving Access to Psychological Therapies (IAPT) practitioners in providing therapy to patients who have an intellectual disability in order to support IAPT services in increasing their capability in this area. Design/methodology/approach – An online survey was conducted of IAPT practitioners in four IAPT services in the north of England. The survey collected respondents demographic information and their experience, confidence and attitudes to working with people with intellectual disabilities. Qualitative responses regarding respondents attitudes, views of barriers, problems, successes and possible solutions to the delivery of therapy to people with intellectual disabilities within IAPT services were collected. The survey results were interpreted by thematic and statistical analysis. Findings – The majority of respondents report having worked with people with intellectual disabilities and identify the need to adapt therapy, but also believe that such therapy should be offered within mainstream services. Thematic analysis identifies the needs for support in training, therapy adaptation and adjustment to pathways. However, the majority of respondents could identify positive outcomes and experiences. Research limitations/implications – This data supports the further development of pathways and offers some broad frameworks for the focus of training and development work for people with intellectual disabilities within IAPT. Social implications – This project has identified a positive attitude and willingness to consider adaptation of therapy for people with intellectual disabilities in practitioners working within IAPT services. Originality/value – Until now the views and experiences of IAPT practitioners in working with this patient group were relatively unknown.

Purpose The purpose of this paper is to explore the characteristics of adults with intellectual disabilities supported by a Community Forensic Learning Disability Team (CFT) and interventions delivered. It discusses the clinical implications of these and examines outcomes such as recidivism. Design/methodology/approach A retrospective case note review of all 70 service users open to the CFT during June 2013 was carried out, using a structured service evaluation tool. Findings The majority of service users (74.3 per cent) had a mild intellectual disability. Multiple mental health and/or physical health diagnoses were common, and 28 per cent had problematic drug or alcohol abuse. Almost half of service users had been victims of physical or sexual abuse, or neglect. Sexual offences were the most common index offence, followed by assault and fire-setting. A wide range of multi-disciplinary interventions were delivered within the Community Forensic Team. Following CFT involvement there was an increase in service users living in supported living in the community and a decrease in people in secure or out of area placements. Over half of service users engaged in no further offending behaviour since their referral, and those who did offend generally showed a decrease in the severity of offending behaviours. There was a large decrease in the number of convictions received. Practical implications The study shows the benefits of a multi-disciplinary Community Forensic Team for offenders with intellectual disabilities in terms of reduced recidivism and range of interventions delivered. It highlights the importance of clinicians within such a team having the skills to work with people with co-morbid diagnoses (e.g. autism) and people with trauma backgrounds and problematic substance use. Originality/value This paper demonstrates the complexity of the service users who are supported by the CFT, as well as the integral role played in supporting individuals to move to less restrictive settings, with positive outcomes.

Purpose– The Real Opportunities project set out to implement a number of the approaches identified through research that can assist transition to adulthood in nine local authority areas in Wales. Supported work experience was delivered by small job coaching teams in each area. The purpose of this paper is to establish the impact of the work experience and employment teams by describing the placements provided, any change in the skills of young people, and the responses to the placements by employers, young people and their families.Design/methodology/approach– Data were collected over 24 months by participating employment services. Questionnaires were administered to employers. Interviews were carried out with a sub-sample of young people (24) participating and a family member (25).Findings– Over a 24-month period 297 young people received supported work experience. In total, 262 young people had an intellectual disability, 35 an autistic spectrum disorder. Up to three placements were delivered to each person, averaging five weeks per placement, with 405 placements in total. In total, 62 per cent of those with two placements had a different category of second work placement to their first. These numbers demonstrated that work experience in community placements is possible with support. Young people improved work skills significantly between first and second placements. Employers reported high satisfaction rates with the young person’s work in a range of key performance areas and company benefits from participation for other staff, company image and customer relations. Interviews with 24 young people and 25 of their family members reported satisfaction with support and placements. Six young people had paid work now, and 33 per cent said they would get a job at some future time. Families reported changes in young person’s outlook but their view of prospects of employment remained pessimistic due to the external environment.Research limitations/implications– Implications for future research are discussed.Practical implications– Implications for transition are discussed.Originality/value– The paper provides new insight into the impact of a large number of supported work experience placements.

Purpose– Attention disorders in people with intellectual disabilities (ID) is common. Current drug treatments are based on the literature in people without ID. The purpose of this paper is to present a review of the drug treatment of Attention Deficit Hyperactivity Disorder (ADHD) in people with ID in the German and English languages literature with the aim of exploring the current evidence base.Design/methodology/approach– The paper provides a general review of the evidence base on drug treatment of ADHD in people with ID from the German and English language literature.Findings– Studies and practice guidance on ADHD in both languages are similar with more information published in English. Much of the evidence on drug therapy to treat ADHD in people with ID is based on studies in children. The literature on ADHD in children without ID is helpful but not specific to all people with ID who have ADHD. The response rates to medication to treat ADHD in people with ID are lower than in people without ID. The occurrence of side effects from medication is more common in people with ID. Co-morbid disorders are often present in people with ADHD that could affect study findings.Practical implications– Medication used to treat ADHD is effective when treating ADHD in people with ID. Prescribers should be aware of guidelines on medication and their potential drug interactions and side effects. Newer drugs could offer more effective treatments because of fewer adverse effects than current medications.Originality/value– The general review offers an insight in to the literature in German and English on ADHD in ID comparing what is published in both languages.

Purpose – The purpose of this paper is to describe the evolution of legislation relevant to people with intellectual disabilities (IDs) since the Scottish Parliament came into being in 1999; this will be particularly relevant to practitioners working with people with IDs within mental health and forensic mental health services. Design/methodology/approach – A descriptive review of the relevant legislation, setting this out in the chronological order in which the legislation was enacted. Findings – The paper demonstrates that legislative reform is a dynamic and evolving process, responsive to social, political and legal agendas. Research limitations/implications – The paper is limited to a description of the relevant legislation in only one part of the UK (Scotland). Practical implications – A helpful summary of the relevant legislation is provided which should be of particular value to readers/practitioners from outwith Scotland. Originality/value – The paper provides an up to date account of the legislative reform in Scotland during the period 1999-2015.

Purpose – The purpose of this paper is to reflect on the response to the scandal of abuse in services for people with intellectual disabilities in the light of research evidence and analysis. Design/methodology/approach – Critical reflection and review of literature. In particular, recent research into possible indicators that a service is at risk of becoming abusive is used to test the hypotheses and implied solutions that are currently being adopted. Findings – That some of the responses to recent scandals are necessary but not sufficient to prevent future harm. Furthermore, some of the proposed solutions may actually increase the likelihood of further abuse. Prevention of abuse requires a broader and more evidence-based response. Originality/value – The synthesis of research and analysis presented here has not been presented previously in the published literature.

Purpose – Despite the longstanding use of music therapy with people with intellectual disabilities and the growing evidence base for using music therapy as a tool to aid behavioural and psychological symptoms of dementia in the general population, there is little work published which details the use of music therapy groups for people with intellectual disabilities who have a diagnosis of dementia. The purpose of this paper is to report a qualitative evaluation of staff views of a music therapy group for people with intellectual disabilities and dementia. Design/methodology/approach – Carers of service users attending the group were interviewed either individually or through a focus group in order to ascertain their views about the music therapy group. The interview transcripts were then analysed using thematic analysis. Findings – Two core themes and eight sub themes emerged from the data. These themes show that the group was felt to be pleasurable and enjoyable for the service users and that some tangible benefits of attending the group were observed by staff members. Notwithstanding the positive feedback, the results also suggested that more work is needed to inform carers of the goals and purpose of such groups. Further psycho-education for carers is suggested as a strategy to support future groups to run successfully. Originality/value – There is little published research into the use of music therapy for people with intellectual disabilities who also have dementia. The current paper provides a starting point for future work in the area and further recommendations for future practice and research are considered.

Purpose – It is widely recognised that people with intellectual disabilities receive a poorer quality of healthcare than their non-disabled counterparts. Training for healthcare professionals in intellectual disability is often scant or non-existent. The purpose of this paper is to explore the usefulness of employing actors with intellectual disabilities as simulated patients in the assessment of trainee psychiatrists. Design/methodology/approach – The development of a structured clinical exam “station” designed to assess the ability of trainee psychiatrists to communicate with a simulated patient played by an actor with an intellectual disability is described. The paper also assesses the potential benefits of this kind of assessment and the experience of actors and examiners taking part in this process. Findings – The station was found to perform well in discriminating between candidates of various abilities and was well received by actors, examiners and observers. The station is now routinely used in the formal assessment of trainee psychiatrists. Practical implications – The use of people with intellectual disabilities in training and assessment appears to be advantageous in terms of improving knowledge, attitudes and skills amongst healthcare professionals and gives increased opportunities for people with intellectual disabilities to undertake valued social roles. Originality/value – Few institutions currently employ actors with intellectual disabilities as simulated patients as part of their training programmes and as a result there is little in the way of literature on this subject. This paper describes an alternative approach to teaching and assessment which falls in line with recommendations from the Department of Health to involve service users in the training of healthcare professionals.

Purpose – Diagnosing psychiatric disorders (PD) in adults with Intellectual Disability (ID) presents several issues and need specific skills and tools. The purpose of this paper is to provide a detailed description of the current status of art through a systematic mapping of the literature. Design/methodology/approach – The authors reviewed the international literature on the basis of the following questions: what are the issues in the psychiatric diagnostic process for adults with ID? What methods and procedures have been used for psychiatric assessment in ID? To date, is it possible to identify some most effective procedures? Findings – The analysis of the literature indicates that main issues of the psychiatric diagnostic process in adults with ID are the following: identification of psychiatric symptoms, behavioural equivalents, diagnostic criteria, setting, source of information, screening, and diagnostic tools. The evidence base is only emerging and although many relevant achievements have been reached in the last two decades, no definitive guideline has been produced. Most recent acquisition also allowed to identify some assessment procedures that are currently considered the most effective. Individualised assessment remains the best way to meet the needs of this heterogeneous and variable patient group. Originality/value – This paper offers a comprehensive and updated description of current achievements and issues towards the assessment of PD in people with ID.

Purpose– This commentary takes Marslandet al.’s paper about services at risk of becoming abusive to the people they support, as a platform to consider issues around implementation science and its role in minimising this risk. The paper aims to discuss this issue.Design/methodology/approach– The commentary is a selected review of implementation science. The research is used to define implementation, identify prerequisites, selectively review methods and comment on fidelity.Findings– The commentary proposes that implementation science has an important role in ensuring evidence-based practice transfers from research to disability services.Originality/value– The commentary offers a viewpoint based on combined research evidence and clinical practice.

Purpose – The purpose of this paper is to examine and compare levels of burnout, traumatic stress and resilience amongst Norwegian nursing care staff in two intellectual disability (ID) services. Design/methodology/approach – This was a cross-sectional survey in which 137 staff completed questionnaires measuring work-related stress, burnout, compassion and resilience. Two groups were compared; staff in the national forensic ID services and staff in the community ID caring services. Findings – Nursing staff in the community ID caring services had significantly more signs of stress and burnout compared to the other group. At the same time they were more compassionate. Originality/value – The different caring cultures examined in this study indicated that the forensic ID staff tended to focus on the physical aspects of the caring role whilst the community ID staff tended to focus on the relational issues. The impact of serious events resulted in a higher level of stress and burnout symptoms, however the community carers showed more compassion to their work.