Recent Submissions

  • Innovative interventions to reduce the stigma attached to intellectual disabilities: A narrative review

    Hankir, Ahmed (2022)
    The stigma attached to intellectual disabilities (ID) can have profoundly adverse effects on the lives of people who suffer from these conditions. Stigma is also a major barrier to accessing specialist services and consequently many people with ID continue to suffer in silence. A confidential inquiry into the premature deaths of people with ID in England and Wales revealed the median age at death of individuals with this condition was 13 years (for males) to 20 years (for females) younger than the median age at death of the general population. It has been posited that stigma is a factor that contributes to the mortality gap between those with ID and those who don't have this condition. The COVID-19 pandemic has created new challenges for people with ID and has further fortified the barriers to specialist services. To reduce stigma, improve the quality of healthcare that is provided to people with this condition and to break down the barriers to specialist services, we must pioneer innovative interventions that leverage the power of technology and 'virtual' contact with people who live with these conditions.
  • Asking parents/carers of young children with Down syndrome about specific eating behaviours and feeding practices could lead to more effective tailored support for feeding problems

    Wood, Sian (2022)
    Commentary on: Rogers SL, Smith B, Mengoni SE. Relationships between feeding problems, eating behaviours and parental feeding practices in children with Down syndrome: A cross‐sectional study. J Appl Res Intellect Disabil. 2022;35(2):596–606. Commentary: Feeding problems have a significant physical, functional and emotional impact on children with DS and their parents/carers,1 2 and are therefore an important area of study. This paper adds to existing evidence highlighting the greater incidence of feeding difficulties children with DS experience1 6 by offering comparisons to TD children. The study identifies greater food avoidance traits as a risk factor for feeding problems and offers suggestive evidence that for children with DS a shorter duration of receiving breast milk may be indicative of later feeding problems, highlighting the need for further research into this area. The findings act as a reminder to healthcare professionals to explore early eating behaviours and parental feeding practices in detail to identify specific areas for support. There is however a lack of depth to the study implications discussion. Consideration of factors such as feeding skills, the impact of dysphagia, the role of professionals with expertise in feeding/dysphagia management and the impact of children with DS’s communication differences on parental feeding practices could have offered greater clinical utility. The authors acknowledge the limitations of the sample size and large age range reducing generalisability and the cross-sectional nature of their study limiting the ability to address causality. There are few strong clinical implications nonetheless; this paper offers further insights to professionals working with parents/carers striving to meet the eating and drinking needs of children with DS.
  • Health needs and their relationship with life expectancy in people with and without intellectual disabilities in England

    Morriss, Richard K. (2022)
    Health needs are common in people living with intellectual disabilities, but we do not know how they contribute to life expectancy. We used the Clinical Practice Research Datalink (CPRD) linked with hospital/mortality data in England (2017-2019) to explore life expectancy among people with or without intellectual disabilities, indicated by the presence or absence, respectively, of: epilepsy; incontinence; severe visual loss; severe visual impairment; severe mobility difficulties; cerebral palsy and PEG feeding. Life expectancy and 95% confidence intervals were compared using flexible parametric methods. At baseline, 46.4% (total n = 7794) of individuals with intellectual disabilities compared with 9.7% (total n = 176,807) in the comparison group had ≥1 health need. Epilepsy was the most common health need (18.7% vs. 1.1%). All health needs except hearing impairment were associated with shorter life expectancy: PEG feeding and mobility difficulties were associated with the greatest loss in life years (65-68% and 41-44%, respectively). Differential life expectancy attenuated but remained (≈12% life years lost) even after restricting the population to those without health needs (additional years expected to live at 10 years: 65.5 [60.3, 71.1] vs. 74.3 [73.8, 74.7]). We conclude that health needs play a significant role but do not explain all of the differential life expectancy experienced by people with intellectual disabilities.
  • Research priorities relating to communication and swallowing for people with learning disabilities across the lifespan

    Money, Della (2022)
    Purpose This research priority setting partnership (PSP) aims to collaboratively identify the "top ten" research priorities relating to communication and swallowing for children and adults with learning disabilities, across the lifespan in the UK, using a modified James Lind Alliance approach. Design/methodology/approach A steering group and reference group were established to oversee the PSP. A survey of speech and language therapists (SLTs) resulted in 157 research suggestions. These were further developed into 95 research questions through a multi-stakeholder workshop. Questions were prioritised via an online card-sort activity completed by SLTs, health-care or education professionals and carers. Research questions were analysed thematically. Ten adults with learning disabilities were supported to assign ratings to themes reflecting their prioritisation. The top ten research priorities were identified by combining results from these activities. Findings The top ten research priorities related to intervention, outcome measurement and service delivery around communication and dysphagia. Originality/value To the best of the authors' knowledge, this is the first UK-wide research PSP on learning disabilities and speech and language therapy across the lifespan. It uses a novel approach to incorporate the preferences of people with learning disabilities in the prioritisation.
  • 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

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