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

Outcome Measures in intellectual disability: A Review and narrative synthesis of validated instruments.

BackgroundOutcome measurement is essential to determine the effectiveness of health interventions and improve the quality of services. The interplay of social, individual, and biological factors makes this a complex process in the psychiatry of people with intellectual disability (PwID).AimReview of outcome measures which are validated in PwID.MethodsA PRISMA-guided review was conducted, using a predefined criteria and a relevant word combination on four databases: EMBASE, Medline, CINAHL and PsycINFO. Each included study was examined for relevance to intellectual disability psychiatry. The psychometric data of each tool was critically assessed. Findings were narratively synthesised.ResultsOf 1,548 articles, 35 met the inclusion criteria. Several outcome measures were identified relevant to intellectual disability psychiatry, including tools for challenging/offending behavior, specific neurodevelopmental/clinical conditions such as ADHD, epilepsy, and dementia however, psychometric properties, validity and reliability varied considerably. The tools identified were largely clinician rated, with a dearth of measures suitable for completion by patients or their family carers.ConclusionMost outcome measures used for PwID lack suitable psychometric properties including validity or reliability for use within the ID population. Of importance, those with alternative expression or are non-verbal have been excluded from the research developing and reporting on measurement instruments. There is an underserved population who risk being left behind in the era of value-based medicine and increasing use of outcome measurement when assessing the effectiveness of healthcare interventions on individual and population levels. This is the first of its kind review in this area

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 28days, 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

Using a picture-based book to support epilepsy care in clinical consultations for people with intellectual disabilities

Background and aims People with intellectual disabilities are more likely to have epilepsy than the general population. A picture-based book, Getting on with Epilepsy, may help to improve their epilepsy management and quality of life. The present study aimed to explore how the book could be best used in routine clinical care. Methods Twenty people with epilepsy and intellectual disabilities were video-recorded using the Getting on with Epilepsy book with a nurse or doctor. This was analysed using conversation analytic methods. Eighteen patients and five clinicians took part in interviews to explore their views on book use, which were thematically analysed. All data were then synthesised to form themes. Results Three themes were identified which demonstrated the importance of (1) understanding the book depicted seizures (2) relating the book to the participants’ experiences (3) using the book as an education and information tool. The themes highlighted the techniques and approaches that clinicians used to facilitate understanding. Some tensions and differences were noted between training and implementation in routine practice, particularly around prompts in themes 1 and 3 intended to correct or change participants’ interpretation of the book. Conclusions The Getting on with Epilepsy book can be used in routine clinical practice to support people with intellectual disabilities and epilepsy. There was a balance between exploring patients’ narratives and understanding with the need to convey clinical information, and this may also apply to the use of other accessible resources

Guidance for the treatment and management of COVID-19 amongst people with intellectual disabilities

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

Chronic constipation in people with intellectual disabilities in the community: cross-sectional study

Background: One-third to half of people with intellectual disabilities suffer from chronic constipation (defined as two or fewer bowel movements weekly or taking regular laxatives three or more times weekly), a cause of significant morbidity and premature mortality. Research on risk factors associated with constipation is limited. // Aims: To enumerate risk factors associated with constipation in this population. // Method: A questionnaire was developed on possible risk factors for constipation. The questionnaire was sent to carers of people with intellectual disabilities on the case-loads of four specialist intellectual disability services in England. Data analysis focused on descriptively summarising responses and comparing those reported with and without constipation. // Results: Of the 181 people with intellectual disabilities whose carers returned the questionnaire, 42% reported chronic constipation. Constipation was significantly associated with more severe intellectual disability, dysphagia, cerebral palsy, poor mobility, polypharmacy including antipsychotics and antiseizure medication, and the need for greater toileting support. There were no associations with age or gender. // Conclusions: People with intellectual disabilities may be more vulnerable to chronic constipation if they are more severely intellectually disabled. The associations of constipation with dysphagia, cerebral palsy, poor mobility and the need for greater toileting support suggests people with intellectual disabilities with significant physical disabilities are more at risk. People with the above disabilities need closer monitoring of their bowel health. Reducing medication to the minimum necessary may reduce the risk of constipation and is a modifiable risk factor that it is important to monitor. By screening patients using the constipation questionnaire, individualised bowel care plans could be implemented

The potential unintended consequences of Mental Health Act reforms in England and Wales on people with intellectual disability and/or autism

The draft Mental Health Bill, which amends the Mental Health Act 1983 for England and Wales, proposes protections for people with intellectual disability and/or autism (ID/A) to prevent detention in hospital in the absence of mental illness. This editorial critically appraises the positive impact and unintended consequences of the proposed reforms for people with ID/A

Correction to: Epilepsy related multimorbidity, polypharmacy and risks in adults with intellectual disabilities: a national study

Correction to: Journal of Neurology 10.1007/s00415-021-10938-3The original version of this article unfortunately contained a mistake. Author name Ravindu De Silva was incorrectly written as Ravi De Silva