RSS 1.0Neurodevelopmental Disorders
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Implementation of the International Classification of Diseases 11th revision behavioural indicators for disorders of intellectual development with co-occurring autism spectrum disorderBackground: The classification of mental, behavioural and neurodevelopmental disorders in the World Health Organization's International Classification of Diseases 11th revision (ICD-11) includes a comprehensive set of behavioural indicators (BIs) within the neurodevelopmental disorders grouping. BIs can be used to assess the severity of disorders of intellectual development in situations in which standardised measures of intellectual functioning and adaptive behaviours are not available or feasible. This international study examines the implementation characteristics of the BIs and compares them to standardised measures for assessing the severity of intellectual impairment and adaptive behaviours in disorders of intellectual development and autism spectrum disorder (ASD). The clinical utility of the ICD-11 and the fidelity of its application in international clinical settings were also assessed. Methods: A total of 116 children and adolescents (5-18 years old) with a suspected or established diagnosis of disorders of intellectual development were included across four sites [Italy (n = 18), Sri Lanka (n = 19) and two sites in India (n = 79)]. A principal component analysis was conducted to evaluate the application of the ICD-11 guidance for combining severity levels. Results: Assessment using the BIs showed a higher proportion of individuals classified with mild severity, whereas the standardised measures indicated a higher proportion of severe ratings. Additionally, individuals with co-occurring ASD tended to have more severe impairments compared with those without ASD, as indicated by both BIs and standardised measures. Overall, the BIs were considered clinically useful, although more time and consideration were required when applying the guidelines for individuals with a co-occurring disorder of intellectual development and ASD. The principal component analysis revealed one principal component representing overall disorders of intellectual development severity levels. Conclusions: The ICD-11 BIs can be implemented as intended in international clinical settings for a broad range of presentations of individuals with neurodevelopmental disorders. Use of the BIs results in similar severity diagnoses to those made using standardised measures. The BIs are expected to improve the reliability of severity assessments in settings where appropriate standardised measures for intellectual and adaptive behaviours are not available or feasible.
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Effectiveness and cost-effectiveness of guided self-help for depression for autistic adults: the Autism Depression Trial (ADEPT-2) - protocol for a multicentre, randomised controlled trial of a remotely delivered low-intensity interventionIntroduction: Depression is three to four times more prevalent in autistic people and is related to reduced quality of life. There is a need for empirically supported psychological interventions for depression specifically adapted to meet the needs of autistic adults. ADEPT-2 aims to establish the clinical and cost-effectiveness of an adapted low-intensity psychological intervention (guided self-help) for depression in autistic adults. Methods and analysis: A two parallel-group multicentre pragmatic randomised controlled trial investigating the effectiveness of GSH for depression in autistic adults. Participants (n=248) aged ≥18 years with a clinical diagnosis of autism currently experiencing depression will be randomised to GSH or treatment as usual (TAU). GSH is a low-intensity psychological intervention based on the principles of behavioural activation adapted for autism. GSH comprises informational materials for nine individual sessions facilitated online by a GSH coach who has received training and supervision in delivering the intervention. The primary outcome will be Beck Depression Inventory-II depression scores at 16 weeks post randomisation with follow-up measures at 32 and 52 weeks. Additional measures of anxiety, patient-rated global improvement, quality of life, work and social adjustment, positive and negative affect will be measured 16 and 52 weeks post randomisation. The primary health economic analysis will assess the cost-effectiveness of GSH compared with TAU over 52 weeks, from a societal perspective including the National Health Service, personal social services, personal expenses, voluntary services and productivity. An embedded qualitative study will explore the acceptability, experiences and adherence of participants and therapists to treatment principles. Ethics and dissemination: This trial has been approved by the East of England - Essex Research Ethics Committee on 10 June 2022 (REC Reference number: 22/EE/0091). The findings of the research will be submitted for publication in peer-reviewed journals and disseminated in an appropriate format to trial participants and the wider public.
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Transition between child and adult services for young people with attention-deficit hyperactivity disorder (ADHD): findings from a British national surveillance studyBackground: Optimal transition from child to adult services involves continuity, joint care, planning meetings and information transfer; commissioners and service providers therefore need data on how many people require that service. Although attention-deficit hyperactivity disorder (ADHD) frequently persists into adulthood, evidence is limited on these transitions. Aims: To estimate the national incidence of young people taking medication for ADHD that require and complete transition, and to describe the proportion that experienced optimal transition. Method: Surveillance over 12 months using the British Paediatric Surveillance Unit and Child and Adolescent Psychiatry Surveillance System, including baseline notification and follow-up questionnaires. Results: Questionnaire response was 79% at baseline and 82% at follow-up. For those aged 17-19, incident rate (range adjusted for non-response) of transition need was 202-511 per 100 000 people aged 17-19 per year, with successful transition of 38-96 per 100 000 people aged 17-19 per year. Eligible young people with ADHD were mostly male (77%) with a comorbid condition (62%). Half were referred to specialist adult ADHD and 25% to general adult mental health services; 64% had referral accepted but only 22% attended a first appointment. Only 6% met optimal transition criteria. Conclusions: As inclusion criteria required participants to be on medication, these estimates represent the lower limit of the transition need. Two critical points were apparent: referral acceptance and first appointment attendance. The low rate of successful transition and limited guideline adherence indicates significant need for commissioners and service providers to improve service transition experiences.
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Clinician perspectives on the use of National Institute for Health and Care Excellence guidelines for the process of transition in Attention Deficit Hyperactivity DisorderBackground: The UK National Institute for Health and Care Excellence (NICE) clinical guidelines recommends the following steps in the transition from child to adult services for young people with attention deficit hyperactivity disorder (ADHD): reassessment before and after transition, transition planning, formal meeting between services, and involvement from young person and carer, completed by age 18. Methods: A UK surveillance study asked clinicians to report young people on their caseloads with ADHD in need of transition to adult services in 2016 to support their continued access to medication need. Clinicians reported young people as they aged to within 6 months of the transition boundary, a prospective questionnaire prior to transition asked about intended transition and the use of local transition protocols. A retrospective questionnaire sent 9 months later established which steps recommended by NICE were followed during transition. Clinicians (38) working in child or adult services were interviewed about their experiences of transition and the use of NICE guidelines during transition and were analysed using a framework approach. Results: Information was shared between services in 85% of the 315 identified transition cases. A joint meeting was planned in 16% of cases; joint working before transfer occurred in 10% of cases. Clinicians were aware of NICE guidelines; they had mixed views on whether (local) guidelines or protocols were helpful. The main reason for not following guidelines was workload and resources: "NICE recommends stuff that is miles above what we will ever be able to provide". Conclusions: Clinicians involved in the transition process of young people with ADHD judged NICE guidelines to be unrealistic given the current limited resources and service organization. More open dialogue is needed for recommendations on service models to bridge the gap between guideline recommendations and what is viewed as feasible and how implementation of guidance is funded, monitored, and prioritized. This may lead to valuable changes in the consultation process, for example, consideration of a layered (gold, standard, and minimal) system for some NICE guidelines.
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The impact of NHS change processes on art therapists working in LD servicesThe impact of working as art therapists in the NHS during protracted change processes, with people with learning disabilities (LD), was investigated in a qualitative heuristic doctoral study (Ashby, Citation2018), which considered concerns about emotional exhaustion and reduced efficacy, symptoms of burnout (Maslach, Citation1982), as a result of occupational stress. The researcher’s own data was examined, and 15 art therapists employed by NHS Trusts across England were interviewed. This article explores how the research was conducted, its findings related to LD services in the NHS and wider employment issues, and addresses how the findings are relevant to all art therapists. Most burnout studies are quantitative and consider workplace sources of occupational stress, but this qualitative research importantly revealed how crucial personal sources of support and stress were in terms of aiding or reducing clinicians’ capacities to cope. There was evidence of job satisfaction, resilience, and personal growth developed over years of practice, and high levels of stress resulted in symptoms of burnout in some participants, but recovery was shown to be possible.
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Problem behaviours and psychotropic medication use in intellectual disability: a multinational cross-sectional surveyBackground Problem behaviours (PBs) are a common cause for clinician contact in people with disorders of intellectual development and may be a common cause for the prescription of psychotropic medication. We aimed to use a large, multinational sample to define the prevalence of PBs, the associations with psychotropic medication use, and to assess for any potential ‘diagnostic overshadowing’ by the label of PBs in a population of people with disorders of intellectual development. Method A multinational, multi-setting, cross-sectional service evaluation and baseline audit was completed. Data were collected from UK hospitals, UK community settings, Sri Lanka and Hong Kong. A semi-structured questionnaire was completed by treating clinicians, capturing demographic details, prevalence rates of intellectual disability and psychotropic medication use, alongside psychiatric co-morbidity. Results A sample size of 358 was obtained, with 65% of included participants treated in an inpatient setting. Psychotropic use was prevalent (90%) in our sample, particularly antipsychotics (74%). The prevalence of PB was high (83%). There was no statistically significant association between psychotropic prescription and recorded psychiatric co-morbidity, suggesting prevalent ‘off-label’ use for PBs, or poor recording of psychiatric co-morbidity. There was some evidence of possible diagnostic overshadowing due to the PB classification. A higher dose of psychotropic medication was associated with aggression toward others (P = 0.03). Conclusions We found evidence of prevalent potential ‘off-label’ use for psychotropic medication, which may be due to PBs. We also found evidence of potential diagnostic-overshadowing, where symptoms of psychiatric co-morbidity may have been attributed to PBs. Our findings provide renewed importance, across borders and health systems, for clinicians to consider a holistic approach to treating PBs, and attempting to best understand the precipitants and predisposing factors before psychotropic prescribing.
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Dementia And Physical Activity (DAPA) trial of moderate to high intensity exercise training for people with dementia: randomised controlled trialObjective: To estimate the effect of a moderate to high intensity aerobic and strength exercise training programme on cognitive impairment and other outcomes in people with mild to moderate dementia. Design: Multicentre, pragmatic, investigator masked, randomised controlled trial. Setting: National Health Service primary care, community and memory services, dementia research registers, and voluntary sector providers in 15 English regions. Participants: 494 people with dementia: 329 were assigned to an aerobic and strength exercise programme and 165 were assigned to usual care. Random allocation was 2:1 in favour of the exercise arm. Interventions: Usual care plus four months of supervised exercise and support for ongoing physical activity, or usual care only. Interventions were delivered in community gym facilities and NHS premises. Main outcome measures: The primary outcome was score on the Alzheimer's disease assessment scale-cognitive subscale (ADAS-cog) at 12 months. Secondary outcomes included activities of daily living, neuropsychiatric symptoms, health related quality of life, and carer quality of life and burden. Physical fitness (including the six minute walk test) was measured in the exercise arm during the intervention. Results: The average age of participants was 77 (SD 7.9) years and 301/494 (61%) were men. By 12 months the mean ADAS-cog score had increased to 25.2 (SD 12.3) in the exercise arm and 23.8 (SD 10.4) in the usual care arm (adjusted between group difference -1.4, 95% confidence interval -2.6 to -0.2, P=0.03). This indicates greater cognitive impairment in the exercise group, although the average difference is small and clinical relevance uncertain. No differences were found in secondary outcomes or preplanned subgroup analyses by dementia type (Alzheimer's disease or other), severity of cognitive impairment, sex, and mobility. Compliance with exercise was good. Over 65% of participants (214/329) attended more than three quarters of scheduled sessions. Six minute walking distance improved over six weeks (mean change 18.1 m, 95% confidence interval 11.6 m to 24.6 m). Conclusion: A moderate to high intensity aerobic and strength exercise training programme does not slow cognitive impairment in people with mild to moderate dementia. The exercise training programme improved physical fitness, but there were no noticeable improvements in other clinical outcomes.
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Interventions for mental health problems in children and adults with severe intellectual disabilities: a systematic review.Objective: Mental health problems are more prevalent in people with than without intellectual disabilities, yet treatment options have received little attention. The aim of this study was to identify and evaluate the effectiveness of pharmacological and psychological interventions in the treatment of mental health problems in children and adults with severe and profound intellectual disabilities, given their difficulties in accessing standard mental health interventions, particularly talking therapies, and difficulties reporting drug side effects. Design: A systematic review using electronic searches of PsycINFO, PsycTESTS, EMBASE, MEDLINE, CINAHL, ERIC, ASSIA, Science Citation Index, Social Science Citation Index and CENTRAL was conducted to identify eligible intervention studies. Study selection, data extraction and quality appraisal were performed by two independent reviewers. Participants: Study samples included at least 70% children and/or adults with severe or profound intellectual disabilities or reported the outcomes of this subpopulation separate from participants with other levels of intellectual disabilities. Interventions: Eligible intervention studies evaluated a psychological or pharmacological intervention using a control condition or pre-post design. Outcomes: Symptom severity, frequency or other quantitative dimension (e.g., impact), as assessed with standardised measures of mental health problems. Results: We retrieved 41 232 records, reviewed 573 full-text articles and identified five studies eligible for inclusion: three studies evaluating pharmacological interventions, and two studies evaluating psychological interventions. Study designs ranged from double-blind placebo controlled crossover trials to single-case experimental reversal designs. Quality appraisals of this very limited literature base revealed good experimental control, poor reporting standards and a lack of follow-up data. Conclusions: Mental ill health requires vigorous treatment, yet the current evidence base is too limited to identify with precision effective treatments specifically for children or adults with severe and profound intellectual disabilities. Clinicians therefore must work on the basis of general population evidence, while researchers work to generate more precise evidence for people with severe and profound intellectual disabilities.
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Reflections on introducing a Leavers’ Preparation Group in an intellectual disability secure servicePurpose The purpose of this paper is to report on the introduction of a Leavers’ Preparation Group in an Intellectual Disability (ID) Secure Service. In the context of reductions in ID inpatient beds and reductions in restrictive practices, discharge and transfers out of hospital settings are increasing. The current group was established to provide support and preparation for service users as they approach discharge/transfer from hospital. The current paper provides example outcome data and reflects on the experience and learning points in delivering such interventions in secure contexts. Design/methodology/approach The Leavers’ Preparation Group is an eight-session preparatory, recovery focussed group intervention focussing on supporting service users as they approach discharge/transfer to lower levels of security. The intervention has a multi-disciplinary approach, focussing on psychosocial aspects of current and future risk reduction. Findings Overwhelmingly service users reported that they experienced the group as positive and beneficial. Personal reflections of the authors are offered on service user attitudes to discharge/transfer, the contextual impact of restrictive systems and the benefits of this type of group intervention. Originality/value This paper reports on clinical practice, which involves multi-disciplinary intervention, co-production with service users and relevant stakeholders, and provides a description of the group intervention. It also offers critical reflection on tensions in this area of service provision, such as control and choice, freedom and responsibility, limitations and restrictions and power imbalances.
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Case study illustrations of a psychological treatment pathway in a secure intellectual disability servicePurpose The purpose of this paper is to describe in detail the treatment pathway utilised in a male medium and low secure intellectual disability (ID) service. Over the preceding five years, service users have followed the outlined treatment pathway. The current paper offers case study material to illustrate the care pathway. Design/methodology/approach The treatment pathway is described and two case examples are provided, illustrating participation in the pathway. Evaluative data are provided on length of hospitalisation, direction of pathway at discharge and risk reduction as assessed by the HCR-20, SVR-20 and HONOS Secure measures. Findings The case examples provided document the assessment and treatment of two male offenders with ID, outlining their treatment pathways, subsequent reductions in assessed risk and their successful community discharge. Originality/value A comprehensive treatment pathway is outlined together with the theoretical rationale, with illustrative case examples.
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The subjective experiences of women with intellectual disabilities and offending behaviour: exploring their experiences of ‘home’Objectives Services supporting individuals with intellectual disabilities are changing in the UK with a drive towards community care and reducing inpatient provision. More needs to be known about the experiences and opinions of individuals living in inpatient settings. Women with intellectual disabilities and offending behavior are a particularly complex, under-represented group affected by these organizational changes. This research aims to consult women with intellectual disabilities, living in a secure hospital, to explore their housing experiences and hopes for future home and care environments. Method Seven participant’s experiences, and the meaning they assign to these experiences, were explored through semi-structured interviews. Their narratives were analyzed utilizing Interpretive Phenomenological Analysis. Results Four superordinate themes emerged from the analysis (i) hospital as helpful (ii) hospital as undesirable (iii) a sense of belonging (iv) ‘I want to be as independent as I can.’ The subtheme ‘importance of people’ emerged throughout with illustrations of why people are important relating to each superordinate theme. Conclusions The women interviewed experienced living in hospital as both helpful and undesirable. They wanted to live as independently as possible in the community. However, they identified several helpful aspects of hospital including receiving specialist support for their complex needs. They desired independence, freedom to choose, personal space, familiarity, and support from individuals who understand their needs. Whilst it is recognized that hospitals cannot be homes for people, they do have a function in providing helpful specialist support to some individuals with intellectual disabilities who have committed serious crimes and/or cannot safely be supported in the community.
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Phelan-McDermid syndrome, bipolar disorder and treatment with lithiumBackground Phelan-McDermid syndrome is caused by a deletion at chromosome 22q13.3, and results in a phenotype characterised by intellectual disability, features of autism, physical and mental health conditions. It is becoming increasingly recognised that bipolar disorder represents part of this phenotype. Materials and methods This case study describes 2 patients with Phelan-McDermid syndrome presenting with bipolar mania at inpatient unit for adults with intellectual disability. Both patients presented with severe disturbance of their behaviour, at times exhibiting aggression, disinhibition and hypersexuality. Results Despite treatment with a number of atypical antipsychotics and anticonvulsant mood stabilising agents, both patients showed the greatest improvement when started on lithium, and were successfully treated with this medication. Conclusions This adds further support to the growing evidence of bipolar disorder contributing to the phenotype of Phelan-McDermid syndrome, and clinicians should have a low threshold for considering the use of lithium in these patients.
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Under representation of people with epilepsy and intellectual disability in researchPurpose One quarter of people with epilepsy have an intellectual disability (ID) and one fifth of people with an ID have epilepsy. Both conditions are associated with higher levels of morbidity, stigma and premature mortality. There have been calls for action to promote more research in this group. We examined if this group are represented adequately in current research. Methods The proportion of research output in epilepsy conferences and publications relevant to ID and the proportion in ID conferences and publications on epilepsy for 2015–2016 were identified. As the percentage of children in the population with epilepsy is 17%, research output of this group was compared with the ID group. Recognised material was classified based on whether it applied to general epilepsy/ID research, children with epilepsy or people with epilepsy and ID. Data was analysed to determine the proportion of presented research specifically identifying people with epilepsy and ID. Results Fewer than 2% of presentations at epilepsy conferences specifically related to the ID and epilepsy group compared to 15% relating to children with epilepsy. Similarly only 1.4% of the research presented at major ID conferences related to those with people with epilepsy and ID. About 5% of published research in the field of epilepsy related to those with ID as compared with 24% for children with epilepsy. Twelve percent of published research in ID specifically identified epilepsy. Conclusion Publications and conference presentations, on the population with epilepsy and comorbid ID is under-represented. Increased research in this area might assist in improving the quality of care for this relatively neglected group.
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Risk markers for suicidality in autistic adultsBackground Research has shown high rates of suicidality in autism spectrum conditions (ASC), but there is lack of research into why this is the case. Many common experiences of autistic adults, such as depression or unemployment, overlap with known risk markers for suicide in the general population. However, it is unknown whether there are risk markers unique to ASC that require new tailored suicide prevention strategies. Methods Through consultation with a steering group of autistic adults, a survey was developed aiming to identify unique risk markers for suicidality in this group. The survey measured suicidality (SBQ-R), non-suicidal self-injury (NSSI-AT), mental health problems, unmet support needs, employment, satisfaction with living arrangements, self-reported autistic traits (AQ), delay in ASC diagnosis, and ‘camouflaging’ ASC. One hundred sixty-four autistic adults (65 male, 99 female) and 169 general population adults (54 males, 115 females) completed the survey online. Results A majority of autistic adults (72%) scored above the recommended psychiatric cut-off for suicide risk on the SBQ-R; significantly higher than general population (GP) adults (33%). After statistically controlling for a range of demographics and diagnoses, ASC diagnosis and self-reported autistic traits in the general population significantly predicted suicidality. In autistic adults, non-suicidal self-injury, camouflaging, and number of unmet support needs significantly predicted suicidality. Conclusions Results confirm previously reported high rates of suicidality in ASC, and demonstrate that ASC diagnosis, and self-reported autistic traits in the general population are independent risk markers for suicidality. This suggests there are unique factors associated with autism and autistic traits that increase risk of suicidality. Camouflaging and unmet support needs appear to be risk markers for suicidality unique to ASC. Non-suicidal self-injury, employment, and mental health problems appear to be risk markers shared with the general population that are significantly more prevalent in the autistic community. Implications for understanding and prevention of suicide in ASC are discussed.
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‘People like me don’t get support’: Autistic adults’ experiences of support and treatment for mental health difficulties, self-injury and suicidalityAutistic people are at high risk of mental health problems, self-injury and suicidality. However, no studies have explored autistic peoples’ experiences of treatment and support for these difficulties. In partnership with a steering group of autistic adults, an online survey was developed to explore these individuals’ experiences of treatment and support for mental health problems, self-injury and suicidality for the first time. A total of 200 autistic adults (122 females, 77 males and 1 unreported) aged 18–67 (mean = 38.9 years, standard deviation = 11.5), without co-occurring intellectual disability, completed the online survey. Thematic analysis of open-ended questions resulted in an overarching theme that individually tailored treatment and support was both beneficial and desirable, which consisted of three underlying themes: (1) difficulties in accessing treatment and support; (2) lack of understanding and knowledge of autistic people with co-occurring mental health difficulties and (3) appropriate treatment and support, or lack of, impacted autistic people’s well-being and likelihood of seeing suicide as their future. Findings demonstrate an urgent need for autism treatment pathways in mental health services.
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QI 1259 Improving Awareness Documentation and Care of Bowel Movements in Learning Disability and Autism (Inpatients, Respite and Community)Aim: To identify constipation at an early stage or any changes to bowel habits that could indicate a physical health condition. To empower patients and staff alike to have healthy and open conversations regarding their bowel movement and urine output health and when to act upon it. Historically, conversation and awareness of healthy bowel movements (BM) has been a taboo topic amongst both staff and patients in Learning Disabilities. Patients in particular can find the topic uncomfortable to talk about which can lead to gaps in healthcare; making it harder for staff and patients to understand their physical healthcare needs. Constipation is also a contributor to death with those of a learning disability (LeDeR reports), with a high use of laxatives for LD&A patients. Initially, a project was proposed to look at physical healthcare as a whole, however it was quickly understood that the topic was extremely broad and a few different projects were initiated, including this one. Tools Used: Stakeholder Analysis - https://aqua.nhs.uk/wp-content/uploads/2023/07/qsir-stakeholder-analysis.pdf; Process Mapping - https://aqua.nhs.uk/wp-content/uploads/2023/07/qsir-mapping-the-process.pdf Project Impact: • A Physical Health Group and Patient Forum has been started in LD&A to foster open conversations. • Patients have been taught to self-report with a user-friendly chart. • Vinyl stickers are now in all toilets to help patients identify good vs bad bowel movements. • Standardised chart to help staff monitor bowel movements in a standard way. • Staff and patients feel more empowered to talk about bowel movements. Staff Feedback; “We have a patient on the ward who is very independent and doesn’t talk about bowel movements. We used the self-reporting chart and they thought it was great! They wrote down their BM and were happy to show us the chart. They said they don’t like to talk about it, which is why they’d never told us before.”
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QI 120 Improving Attendance in the CPIP (Cerebral Palsy Integrated Pathway) ClinicAim: To reduce the mean DNA (Did Not Attend) / WNB (Was Not Brought) rate at the CPIP Clinic from 26.8% to 10% by July 2022. The CPIP clinic experiences several missed appointments each week. These unused clinic slots are very costly due to multidisciplinary staff involvement. QI tools were used to monitor non-attendance, review processes and develop change ideas. PDSA cycles were used to test change ideas including the introduction of automated text messages and the streamlining of admin processes. Tools Used: Driver Diagram - https://aqua.nhs.uk/wp-content/uploads/2023/07/qsir-driver-diagrams.pdf; PDSA Cycles - https://aqua.nhs.uk/wp-content/uploads/2023/07/qsir-pdsa-cycles-model-for-improvement.pdf; SPC Charts - www.england.nhs.uk/statistical-process-control-tool/; Process Mapping - https://aqua.nhs.uk/wp-content/uploads/2023/07/qsir-mapping-the-process.pdf. Project Impact: The team reduced the DNA/WNB rate from 26.8% to 10.6% and implemented a cancellation process. They now have benchmarking data to assist them with the next steps of the project. An unintended consequence of the project was an increase in the cancellation rate from 6.7% to 17.6%. This has led to a continuation of the project with a new project aim: To improve the mean attendance rate in the CPIP clinic from 71% to 90% by July 2023.
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QI 149 Increasing Referrals to the Children’s Cerebral Palsy Strengthening GroupAim: Increase the referral rate for the Cerebral Palsy strengthening group from 0% in March 2022 to 80% by September 2023. A virtual group was set up in 2021 for children and young people with Cerebral Palsy. As Covid restrictions reduced there was a noted decrease in referrals and an increase in requests from parents to move the group from virtual to face to face. The project was initially set up in March 2022 to scope the barriers to referral and attendance and improve the referral rate into the group. Increasing referrals would mean that sufficient outcome measures could be collected to evaluate clinical effectiveness of treatment. Tools Used: PDSA Cycles - https://aqua.nhs.uk/wp-content/uploads/2023/07/qsir-pdsa-cycles-model-for-improvement.pdf; Driver Diagram - https://aqua.nhs.uk/wp-content/uploads/2023/07/qsir-driver-diagrams.pdf; Sustainability Tool - https://aqua.nhs.uk/wp-content/uploads/2023/07/qsir-sustainability-model.pdf. Project Impact: The referral rate increased to 81% of the full capacity for the group. Seeing patients in a group rather than 1:1 has: Saved 18 hours of staff time per cohort (108 hours of clinical time saved over the last year). £373.74 has been saved per cohort. This equates to savings of £2242 over the last year and up to £2616 next year. Attendance at the groups has enabled us to collect and compare data through outcome measures. These have shown large clinical benefits which have been maintained when 1 year post group outcome measures have been repeated. Average improvement in 6 minute walk test (6MWT) scores for GMFCS 1 and 2 patients show a statistically significant improvement. The group has progressed to running face to face and since re-starting in January 2023 has successfully run with patients within each group and referral rates above 50% maintained in each cohort. All patient feedback has been positive. The average improvement in strength (MRC) showed increase or maintenance in all areas for each patient.
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QI 152 To Improve Patient Safety for Those at Risk of Choking in an Inpatient SettingAim: To Increase Awareness and Increase Referrals by 30% for Patients at Risk Of Choking Within Learning Disabilities & Autism & Mental Health Inpatient Services. This project has been run jointly across MH and LD&A inpatient services. Across the services there were only small numbers of referrals being received, these were often following very severe choking events. Previous attempts to implement a referral process had been been unsuccessful. The processes, referral information, national guidance etc were reviewed to understand the current situation. Based on this a screening tool and referral process along with awareness training were developed and tested on one ward and gradually rolled out across other wards as the tool and process was adapted. Awareness training has been rolled out across the mental health wards and as part of staff induction in Learning Disabilities and Autism. Tools Used: Driver Diagrams - https://aqua.nhs.uk/wp-content/uploads/2023/07/qsir-driver-diagrams.pdf; SPC Charts - https://aqua.nhs.uk/wp-content/uploads/2023/07/qsir-statistical-process-control.pdf; PDSA Cycles - https://aqua.nhs.uk/wp-content/uploads/2023/07/qsir-pdsa-cycles-model-for-improvement.pdf. Project Impact: Standardised screening tool for assessing risk and making referrals to Dysphagia Service. Monthly report to Dysphagia Service re: choking incidents. Increase in referral rate for dysphagia assessment. Increased staff awareness across inpatient services. Screening being embedded into MH & LD&A admission pathway. Screening being completed as standard within Health Action Plan in LD&A. Facilities awareness and food Modification training.
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Transitioning from child and adolescent mental health services with attention-deficit hyperactivity disorder in Ireland : case note reviewIn a context of international concern about early adult mental health service provision, this study identifies characteristics and service outcomes of young people with attention-deficit hyperactivity disorder (ADHD) reaching the child and adolescent mental health service (CAMHS) transition boundary (TB) in Ireland. The iTRACK study invited all 60 CAMHS teams in Ireland to participate; 8 teams retrospectively identified clinical case files for 62 eligible young people reaching the CAMHS TB in all 4 Health Service Executive Regions. A secondary case note analysis identified characteristics, co-morbidities, referral and service outcomes for iTRACK cases with ADHD (n = 20). Two-thirds of young people with ADHD were on psychotropic medication and half had mental health co-morbidities, yet none was directly transferred to public adult mental health services (AMHS) at the TB. Nearly half were retained in CAMHS, for an average of over a year; most either disengaged from services (40%) and/or actively refused transfer to AMHS (35%) at or after the TB. There was a perception by CAMHS clinicians that adult services did not accept ADHD cases or lacked relevant service/expertise. Despite high rates of medication use and co-morbid mental health difficulties, there appears to be a complete absence of referral to publicly available AMHS for ADHD youth transitioning from CAMHS in Ireland. More understanding of obstacles and optimum service configuration is essential to ensure that care is both available and accessible to young people with ADHD.
