Recent Submissions

  • A resource on domestic abuse for people with learning disabilities

    Atkinson, Sarah (2021)
    This article outlines the development of an easy-to-read, wallet-sized resource produced in collaboration with people with learning disabilities and professionals who work with them. It is now being used widely across Nottinghamshire by healthcare, social services and the police, and an electronic version has been made available nationally.
  • The evidence for cognitive behavioural therapy in any condition, population or context: a meta-review of systematic reviews and panoramic meta-analysis

    das Nair, Roshan (2021)
    The majority of psychological treatment research is dedicated to investigating the effectiveness of cognitive behavioural therapy (CBT) across different conditions, population and contexts. We aimed to summarise the current systematic review evidence and evaluate the consistency of CBT's effect across different conditions. We included reviews of CBT randomised controlled trials in any: population, condition, format, context, with any type of comparator and published in English. We searched DARE, Cochrane, MEDLINE, EMBASE, PsycINFO, CINAHL, CDAS, and OpenGrey between 1992 and January 2019. Reviews were quality assessed, their data extracted and summarised. The effects upon health-related quality of life (HRQoL) were pooled, within-condition groups. If the across-condition heterogeneity was I2 < 75%, we pooled effects using a random-effect panoramic meta-analysis. We summarised 494 reviews (221 128 participants), representing 14/20 physical and 13/20 mental conditions (World Health Organisation's International Classification of Diseases). Most reviews were lower-quality (351/494), investigated face-to-face CBT (397/494), and in adults (378/494). Few reviews included trials conducted in Asia, South America or Africa (45/494). CBT produced a modest benefit across-conditions on HRQoL (standardised mean difference 0.23; 95% confidence intervals 0.14–0.33, I2 = 32%). The effect's associated prediction interval −0.05 to 0.50 suggested CBT will remain effective in conditions for which we do not currently have available evidence. While there remain some gaps in the completeness of the evidence base, we need to recognise the consistent evidence for the general benefit which CBT offers.
  • Compliance to completion of sodium valproate annual risk acknowledgement form among women of child-bearing age prescribed sodium valproate in the intellectual disability (ID) services of an NHS trust

    Ohize, Victor; Bagalkote, Deval (2021)
    Aims To determine the proportion of women of child-bearing age prescribed SV who have the SV ARF filled. Background In 2018, the Medicines and Healthcare products Regulatory Agency (MHRA) gave guidance regarding Sodium Valproate (SV) prescription. It acknowledged the significant risk of birth defects and developmental disorders in women of child-bearing age prescribed SV. Consequently, the MHRA recommendation is that SV must not be used in females of child-bearing age unless: conditions of pregnancy prevention programme are met; other treatments are ineffective or not tolerated; and evidence of discussion of risks with patient or carer and annual review of the risks are documented. The evidences of the above criteria are expected to be documented in an Annual Risk Acknowledgement Form (ARF). Method Retrospective study involving systematic search of Trust database to identify women with ID, aged 16–50 years prescribed SV from 2018 to 2019. Result 18 of 28 patients had ARF filled, a 64% compliance. The main indications for SV prescription were epilepsy; challenging behaviour; and mood stabilization. The distribution showed neurology and psychiatrist led prescription initiation equally distributed at 50%. The ARF compliance was higher in the neurology group (93%) compared to 36% in psychiatrist group. A review across the 5 ID teams (A,B,C,D and E) of the trust shows variable compliance to ARF compliance (17%,81%,100%,60%,0% respectively) with teams having higher proportion of neurology led SV prescription initiation also having higher proportion of ARF completion compliance (0%,55%,80%,80%,0% respectively). Conclusion Conclusion / Recommendation ARF compliance is below standard at 64%. Despite the SV prescription being equally distributed between neurology led and psychiatry led, patients whose prescription of SV is neurology led (prescription indication as epilepsy) had better ARF compliance outcome (93%) compared with patients whose prescription is psychiatry led (prescription indication as challenging behaviour or mood stabilization) with 36% ARF compliance. Organizational difference with dedicated epilepsy nurse in the ID service means patients with epilepsy had reviews of medication and compliance to MHRA guidance in completing the ARF. There is need to increase doctors’ awareness to review ARF status during patients’ appointment. Information Technology design to flag up out of date ARF may be helpful. The review of ARF may also flag up consideration of other alternatives: behavioural, psychological, functional and environmental interventions as well as alternative medications like Risperidone for challenging behaviours and other mood stabilizing options. This will minimize SV prescription, which is the original goal of the MHRA guidance.
  • Is speech and language therapy effective at improving the communication of adults with intellectual disabilities?: A systematic review

    Wood, Sian; Standen, Penny J. (2021)
    Background A significant proportion of adults with intellectual disabilities (ID) experience speech, language and communication difficulties which are associated with poor physical and mental health outcomes. Speech and language therapy (SLT) interventions are an important way to address these communication difficulties, yet there is limited available evidence to provide information about the effectiveness of the different approaches used for this heterogeneous group. Aims To review the evidence available for the effectiveness of SLT interventions aimed at improving communication for adults with ID. Methods & Procedures A systematic search across relevant databases was performed. Information on methodological details of each relevant study, along with descriptions of the SLT interventions employed, were extracted and the Crowe Critical Appraisal Tool (CCAT) was used to assess quality. Findings were discussed in a narrative synthesis grouped by target communication skill. Outcomes & Results A total of 10 relevant studies met the inclusion criteria. These were predominantly interventions aimed directly at adults with ID to improve speech, increase augmentative and alternative communication (AAC) use and develop interaction skills, with one study addressing work with carers. The included studies were all rated as low quality. There is weak preliminary evidence that SLT input can improve the communication skills of adults with ID. Conclusions & Implications There is insufficient evidence to draw strong conclusions about the effectiveness of SLT in this population. Further high-level evidence across speech, language and communication domains is urgently needed. What this paper adds What this paper adds to existing knowledgeWhat is already known on the subject What are the potential or actual clinical implications of this work? There is limited evidence for community health interventions used with adults with ID. Previous reviews of SLT interventions found a lack of evidence base for this population. Some areas of SLT practice such as AAC have demonstrated potential benefits and other areas including speech work, social communication skills and training for communication partners have some evidence base for children with ID but there is currently insufficient evidence for adults with ID. The study systematically reviews the current evidence base available when considering the effectiveness of SLT intervention for adults with ID. It provides weak evidence to suggest SLT intervention can improve communication in this population and highlights the need for clinically relevant, robustly designed studies to be undertaken in this field. The lack of high-quality studies with sufficient power to draw conclusions about effectiveness means SLTs are not able to base their intervention choices on firm evidence. There is an urgent need to conduct robust research into the effectiveness of SLT interventions for adults with ID.
  • Mortality disparities and deprivation among people with intellectual disabilities in England: 2000-2019

    Morriss, Richard K. (2021)
    BACKGROUND: The effect of policy initiatives and deprivation on mortality disparities in people with intellectual disabilities is not clear. METHODS: An electronic health record observational study of linked primary care data in England from the Clinical Practice Research Datalink and the Office for National Statistics deaths data from 2000 to 2019 was undertaken. All-cause and cause-specific mortality for people with intellectual disabilities were calculated by gender and deprivation status (index of multiple deprivation quintile) using direct age-standardised mortality rates (all years) and ratios (SMR; 2000-2009 vs 2010-2019). RESULTS: Among 1.0 million patients (n=33 844 with intellectual disability; n=980 586 general population without intellectual disability), differential mortality was consistently higher in people with intellectual disabilities and there was no evidence of attenuation over time. There was a dose-response relationship between all-cause mortality and lower deprivation quintile in the general population which was not observed in people with intellectual disabilities. Cause-specific SMR were consistent in both the 2000-2009 and 2010-2019 calendar periods, with a threefold increased risk of death in both males and females with intellectual disabilities (SMR ranges: 2.91-3.51). Mortality was highest from epilepsy (SMR ranges: 22.90-52.74) and aspiration pneumonia (SMR ranges: 19.31-35.44). SMRs were disproportionately high for people with intellectual disabilities living in the least deprived areas. CONCLUSIONS: People with intellectual disabilities in England continue to experience significant mortality disparities and there is no evidence that the situation is improving. Deprivation indicators may not be effective for targeting vulnerable individuals.
  • People with learning disabilities also experience domestic abuse

    Atkinson, Sarah (2021)
    Domestic violence and abuse is still a societal taboo and it can be difficult to raise this topic with a patient. Additional difficulties of having this conversation with someone with a learning disability means questions are seldom asked.
  • Speech and language therapy management models

    Money, Della (2002)
    Historical and theoretical perspectives; Communication environment; Communication partners; A shared model of communication; Intervention - Models of speech and language therapy management; Practical application of management models; Research supporting management models
  • Inclusive communication - coming soon near you?

    Money, Della (2002)
    The white paper "Valuing People" committed speech and language therapy services to the promotion of choice, inclusion, independence and civil rights. This article describes how the Means, Reasons and Opportunities model was developed and used for teaching staff working with people with learning disabilities. Five core roles for the service were identified as: 1. Managing health needs; 2. Making information accessible; 3. Using shared means of communication; 4. Promoting reasons for communication; and 5. Creating opportunities for communication. Developing communication policies and strategies to address these issues was essential for the individual, those in his/her immediate environment, and the local community. The Means, Reasons, Opportunities model was used to introduce the idea of "real-world understanding" to distinguish the differences between verbal and situational understanding, and introduce the concept of functional understanding. This has been used as a framework for inclusive or total communication as part of the communication strategy across Nottinghamshire. The use of inclusive communication is increasingly recognised as best practice and effective use of speech and language therapy services.
  • Great idea - but how do we do it?

    Money, Della (2002)
    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.
  • A pragmatic mixed-methods review of changing "case-complexity" of referrals to an intensive support service

    Clifford, Adam; Kemp, Francesca G. (2020)
    Purpose "Case-complexity" is a widely used but under-explored concept across health and social care. A region's Intensive Support Teams (ISTs) had been reporting an increase in "case-complexity", but had not tested this hypothesis against data. This study aims to investigate this question through a pragmatic mixed-methods approach as part of a wider service evaluation. Design/methodology/approach Health of the Nation Outcome Scales for People with Learning Disabilities (HoNOS-LD) scores were used (n = 1,766) to estimate average "case-complexity" of referrals over an eight-year sample period. Two focus groups for IST staff (n = 18) explored why "case-complexity" appears to be increasing. Participant perspectives were subjected to thematic analysis. Findings Average HoNOS-LD scores have steadily increased over the sample period, suggestive of increasing "case-complexity". Focus groups identified three broad themes to potentially explain the increased complexity: effects of Transforming Care; people's changing and unchanging support systems; and issues related to mild and borderline intellectual disability. Many perspectives are grounded in or supported by evidence. Research limitations/implications Implications and limitations of findings are discussed, including areas for further consideration and research. The well-designed "short-cut" is promoted as a strategy for busy professionals in need of practice-based evidence but with limited research time and resources. Originality/value The findings and discussion will be of value to anyone involved in the design, commissioning and delivery of mental health and challenging behaviour services to people with intellectual and developmental disabilities (IDD) under Transforming Care. Study methodology is easily replicable to build broader picture about "case-complexity" among UK's IDD population.
  • Lacosamide in the general population and in people with intellectual disability: Similar responses?

    Pashley, Sarah (2020)
    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
  • Clinical and cost effectiveness of staff training in the delivery of Positive Behaviour Support (PBS) for adults with intellectual disabilities, autism spectrum disorder and challenging behaviour - randomised trial

    Bosco, Alessandro (2020)
    BACKGROUND: Although Positive Behaviour Support (PBS) is a widely used intervention for ameliorating challenging behaviour (CB), evidence for its use in adults with intellectual disability (ID) and comorbid autism (ASD) is lacking. We report a planned subsidiary analysis of adults with both ASD and ID who participated in a randomised trial of PBS delivered by health professionals. METHODS: The study was a multicentre, cluster randomised trial conducted in 23 community ID services in England, participants were randomly allocated to either the delivery of PBS (n = 11 clusters) or to treatment as usual (TAU; n = 12). One-hundred and thirteen participants (46% of all participants in the trial) had a diagnosis of ID, autism spectrum disorder and CB (ASD+); (47 allocated to the intervention arm, and 66 to the control). CB (primary outcome) was measured with the Aberrant Behaviour Checklist total score (ABC-CT). Secondary outcomes included mental health status, psychotropic medication use, health and social care costs and quality adjusted life years (QALYs) over 12 months. RESULTS: There were no statistically significant differences in ABC-CT between ASD+ groups randomised to the two arms over 12 months (adjusted mean difference = - 2.10, 95% CI: - 11.3 7.13, p = 0.655) or other measures. The mean incremental cost of the intervention per participant was pound628 (95% CI - pound1004 to pound2013). There was a difference of 0.039 (95% CI - 0.028 to 0.103) for QALYs and a cost per QALY gained of pound16,080. CONCLUSIONS: Results suggest lack of clinical effectiveness for PBS delivered by specialist ID clinical teams. Further evidence is needed from larger trials, and development of improved interventions. TRIAL REGISTRATION: NCT01680276.
  • Standardizing the assessment of emotional development in adults with intellectual and developmental disability

    Hudson, Mark (2020)
    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)
  • Consensus-based good practice guidelines for clinical psychologists to support care staff in enabling sexual expression in people with intellectual disabilities-A Delphi study

    English, Brad (2019)
    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.

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