The views of psychiatrists on proposed changes to the England and Wales Mental Health Act 1983 legislation for people with intellectual disability: A national study.

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.

Who cares? A scoping review on intellectual disability, epilepsy and social care.

PURPOSE: Nearly a quarter of people with Intellectual disability (PwID) have epilepsy. Many have seizures across their lifetime. In the UK supporting their epilepsy linked risks and needs, particularly in professional care settings and in the community, requires significant social care input. Therefore, the interface between social and health care services is important. This study aim is to identify key intersectional areas of social provision for PWID and epilepsy. METHODS: A scoping review of the literature was performed in accordance with PRISMA guidance with suitable search terms. The search was completed in CINAHL, Embase, Psych INFO, SCIE, and Cochrane electronic databases by an information specialist. A quality assessment was completed for the included studies where appropriate. The included studies were analysed qualitatively to identify key themes and provide a narrative description of the evidence by two reviewers. RESULTS: Of 748 papers screened, 94 were retrieved. Thirteen articles met the inclusion criteria with a range of methodologies. A thematic analysis generated four key categories for significant social care involvement i.e., staff training and education; emergency seizure management; holistic approach to care; and nocturnal monitoring and supervision. CONCLUSIONS: PwID with epilepsy have support needs that require fulfilling by various aspects of special care provision, many within the social ambit. Inspite of evidence of these needs and recurrent calls to work jointly with social care providers this has not happened. There is limited research into social care role in epilepsy management in PwID which needs addressing.

Clothes, Sensory Experiences and Autism: Is Wearing the Right Fabric Important?

Tactile defensiveness in autistic individuals is the least investigated sensory modality. The current multi-component, explorative study aimed to understand the experiences of ten autistic adults regarding tactile defensiveness and fabrics, using semi-structured, one-to-one interviews. Participants were asked to discuss the effects of seven provided samples of fabrics and were also asked to bring their 'favourite' fabric (s) and express their thoughts about their choices. Using Interpretative Phenomenological Analysis and Content Analysis, the findings showed that some fabrics can impact individuals' reported wellbeing. Participants' experiences with several stimuli appeared to have helped them implement coping strategies. By understanding tactile defensiveness, society could move towards increasing autism-friendly approaches with appropriate fabrics. Recommendations for future research, policy and practice are also discussed.

Quality of life measurement tools for people with dementia and intellectual disabilities: A systematic review.

BACKGROUND: Adults with intellectual disabilities are an at-risk group of developing dementia. In the absence of a cure for dementia, emphasis on treatment is the promotion of Quality of life (QoL). The aim of this review is to identify and describe QoL tools for people with intellectual disabilities and dementia. METHOD: A systematic review was carried out using 10 databases and papers from up to March year 2021. RESULTS: Two instruments were identified and examined. The QoL in late-stage dementia, which showed evidence of good levels of internal consistency, intra-rater reliability, test-retest reliability, and convergent validity. The Dementia Quality of Life - proxy was also used; however, its psychometric properties have yet to be studied within the intellectual disabilities population. CONCLUSION: It is recommended instruments should be developed and psychometrically tested specifically for adults with intellectual disabilities and dementia to help inform policy makers, measure outcomes of interventions and personal outcomes.

Social Media and Cyber-Bullying in Autistic Adults.

Social media can lead to rejection, cyber-bullying victimisation, and cyber-aggression, and these experiences are not fully understood as experienced by autistic adults. To investigate this, 78 autistic adults completed self-report measures of social media use, cyber-bullying victimisation, cyber-aggression, and self-esteem. High levels of social media use were found to be associated with an increased risk of cyber-victimisation; whereas self-esteem was positively correlated with feelings of belonging to an online community and negatively correlated with feelings of being ignored on social network sites and chat rooms. Future studies are needed to further investigate the experience of cyber-bullying victimisation of autistic adults.

Life after release from prison: The experience of ex-offenders with intellectual disabilities.

BACKGROUND: In the UK, little is known about the experience of ex-prisoners with intellectual disabilities. METHOD: A qualitative study was therefore conducted to investigate what life is like for ten men with intellectual disabilities who left prison at least 9 months previously. Semi-structured interviews were employed to explore the men's views of post-prison life, including opportunities/challenges and support received from services. RESULTS: Through interpretative phenomenological analysis, four over-arching themes were constructed: the nature of support and services, the difficulty of staying out of trouble, the importance of family and the need to act the "tough guy". The participants reported being extremely under-supported. They were often hostile about staff who they felt were too focused on their previous crime. CONCLUSIONS: In general, men were very under-supported and the upheavals of post-prison lives appeared to be "normalized" by them. Better understanding of their lives within their social context would benefit their community re-entry.

"Put bluntly, they are targeted by the worst creeps society has to offer": Police and professionals' views and actions relating to domestic violence and women with intellectual disabilities.

BACKGROUND: Little is known about the attitudes and practices of key personnel towards the domestic violence experienced by women with intellectual disabilities. METHOD: An online survey was conducted of Police officers and health and social care professionals. A total of 717 Police and other professionals across a wide variety of UK sites responded. Research questions were focussed on direct experience, attitudes and responses. RESULTS: Approximately half of all respondents had direct experience of working with a woman with intellectual disabilities who had been through domestic violence. Professionals were more likely than the Police to see women with intellectual disabilities as being especially vulnerable. The majority of both professionals and Police believed women with intellectual disabilities were deliberately targeted by violent and abusive men. CONCLUSIONS: More training is needed for both the Police and health and social care professionals specifically in domestic violence as it affects women with intellectual disabilities.

Exploring the impact of mental capacity on breast screening for women with intellectual disabilities.

This study explores the impact of mental capacity in relation to breast screening for women with intellectual disabilities in the UK. Participation in breast screening is considerably lower for women with intellectual disabilities compared to the general population. Barriers to screening include poor mobility and behavioural difficulties. There is currently no research which primarily explores the relationship between mental capacity and breast screening for this group of individuals. This paper presents the results of a cross-sectional survey of 131 women with intellectual disabilities supported by eight Social Care Providers within England and Wales. The data were collected between January 2017 and July 2017. The current research explores the decision-making process surrounding breast screening, considering the impact of associated risk factors during this process. Participants completed a specifically created survey addressing the aforementioned issues. The results indicated that women who lacked capacity, were less likely to engage in breast screening. It was also demonstrated that the process outlined in the Mental Capacity Act (MCA; 2005) was not always followed; women were not routinely assessed if there were doubts regarding their decision-making ability around breast screening and best interest meetings (BIM) were not always held if the person lacked capacity. In order to be able to generalise the current findings, further research is needed to gain a broader understanding of how professionals make decisions around breast screening for women with intellectual disabilities in case the individuals are unable to decide this independently.