Great government ideas can be quite a challenge to put into practice - particularly when accompanied by a short timescale. This article describes how the Trent Region special interest group worked on a consensus framework for developing communication strategies to benefit people with learning difficulties. Principles and processes agreed for each of the key elements of management, training, and networks and resources are listed. The definition of a communication strategy was a major task, and the resulting collaborative framework is given in the article.

Purpose: Epilepsy prevalence is significantly higher in people with Intellectual Disability (ID) compared to people with epilepsy (PWE) from the general population. Increased psychological and behavioural problems, healthcare costs, morbidity, mortality and treatment resistance to antiepileptic drugs (AEDs) is associated with epilepsy in ID populations. Prescribing AEDs for PWE and ID is challenging and influenced heavily by studies conducted with the general population. Our study compares Lacosamide (LCM) response for the ID population to those from the general population; using data from an UK based epilepsy database register (EP ID/PDD AED Register). Methods: Pooled retrospective case notes data for PWE prescribed LCM at 11 UK NHS Trusts were analysed. Participants were classified as per WHO guidance into groups of moderate-profound ID, mild ID and General population. Demographics, concomitant AEDs, starting and maximum dosage, exposure length, adverse effects, dropout rates, seizure frequency were collected. Group differences were reported as odds ratios estimated from univariable logistic regression models. Results: Of 232 consented participants, 156 were from the general population and 76 had ID (24 mild, 52 moderate-profound). Twelve month withdrawal rates and reasons, efficacy, side-effects, start and maximum doses were similar between the groups. Dose titration between baseline and three months was significantly slower in the ID group (p = 0.02). Conclusion: There were no differences for LCM outcomes between general and ID groups. Slower LCM titration in ID populations in the first 3 months was associated with higher retention and lower behavioural side effects as compared to similar European studies. © 2020 The Authors

Objective The Scale of Emotional Development—Short (SED‐S) is an instrument to assess the level of emotional development (ED) in people with intellectual and developmental disability. Index cases are developed as a didactic tool to standardize the application of the scale. Method In a stepwise process, a European working group from six countries developed five index cases, one for each level of ED. All cases were first scored by 20 raters using the SED‐S and then rephrased to reduce inter‐rater variations (SD > 0.5). Results All five index cases yielded overall ratings that matched the intended level of ED. Across the range of ED, Regulating Affect needed rephrasing most to ensure a distinct description within each level of ED. Conclusions The tri‐lingual, cross‐cultural evolution of five index cases contributes to a standardized application of the SED‐S and can serve as training material to improve the inter‐rater reliability of the SED‐S across different cultures and languages. (PsycINFO Database Record (c) 2020 APA, all rights reserved) (Source: journal abstract)

BACKGROUNDCare staff supporting people with intellectual disabilities (PWID) report accepting views on PWID's sexual expression, but people with intellectual disabilities report their sexual expression is restricted by care staff.METHODSWe recruited a panel of 17 UK clinical psychologists experienced in helping care staff support PWID's sexual expression. We used the Delphi Method to develop consensus-based practice guidelines for UK clinical psychologists supporting care staff in this way.RESULTSHaving proposed three guidelines each in Round One, panel members reached consensus (≥90% agreement) that 12 were important, falling under four themes: "Addressing staff attitudes," "Addressing uncertainty about rights and responsibilities of people with intellectual disabilities," "Locating the problem, being part of the solution," and "Supporting care staff to understand and reflect upon their role."CONCLUSIONSClinical psychologists help care staff support PWID's sexual expression by normalizing care staff concerns, encouraging reflection, clarifying PWID's rights, and prompting those at managerial and service level to support care staff.

BACKGROUND: Positive Behaviour Support (PBS) for challenging behaviour is a complex intervention. Process evaluation is pivotal in fully understanding the mechanisms and contextual factors that impact on participant outcomes. AIMS: To conduct a process evaluation of a national clinical trial investigating the impact of PBS-based staff training on the level of challenging behaviour in adults with intellectual disability. METHOD: The Medical Research Council guidance for process evaluation of complex interventions was followed. Semi-structured interviews with 62 stakeholders from the intervention arm (service users, family and paid carers, service managers, staff who delivered the intervention and PBS trainers), quantitative data from the study database and an external evaluation of the quality of the PBS plans were used. RESULTS: Twenty-one health staff volunteered to be trained in delivering PBS. Available log data from 17 therapists revealed that they worked with 63 participants a median of 11.50 hours (IQR 8-32). Only 33 out of 108 reports had included all elements of the intervention. Another 47 reports had some elements of the intervention. All PBS plans were rated weak, indicating insufficient quality to impact challenging behaviour. Stakeholders reported an appreciation of PBS and its potential to impact quality of care and engagement with the participant. However, they also identified important challenges including managing PBS-related caseloads, paid carer turnover and service commitment to the delivery of PBS. CONCLUSIONS: PBS-based staff training was well received, but therapists found it difficult to undertake all the elements of the intervention in routine care. Implementing a workforce training strategy is important to better define the active components of PBS, and resource implications if the intervention is no better than usual care.

Discovery awareness (DA) is an approach to using video within structured meetings to help staff become more mindful, aware and interested in a client they are supporting who has intellectual disabilities and challenging behaviour. The objective was to evaluate whether, and how, DA is helpful for staff in both inpatient and community settings, and whether it increases self-efficacy in working with people with challenging behaviour. A two-phase mixed method design was employed. For phase 1, forty staff who took part in one of seven single DA meetings completed the Challenging Behaviour Self-Efficacy Scale pre- and post-DA. In addition, post-DA, participants completed an Adapted Helpful Aspects of Therapy Scale (AHAT). For phase 2, six participants completed a follow-up Change Interview; 3–12 weeks after DA. Descriptive statistics reveal participants found events in the DA ‘greatly helpful’. The changes identified varied in whether they were expected or not, but were unlikely to occur without DA and ‘very important’. Statistical analysis showed no significant changes in self-efficacy following the DA. A thematic analysis on the qualitative data generated by the change interviews and AHAT identified three main themes: Impact on interaction; DA is unique and valuable; and the power of the process. The latter had three subthemes: a structure to facilitate change, making use of the content and reflective space to promote learning. Attendance at a single DA meeting does not increase staff perceptions of self-efficacy, however, staff find the process of DA helpful as it encourages reflection on their interactions with individuals with intellectual disability and challenging behaviour and attuning of their interactions, though further research is needed. © 2019, © The British Society of Developmental Disabilities 2019.