CWPT Intellectual Disorders

Permanent URI for this collection

https://westmid.openrepository.com/handle/20.500.14200/3602

Browse

Factors Associated With Length of Hospital Stay for Forensic Psychiatric Inpatients With Intellectual Disabilities
(Wiley, 2025-05-08) McKenna, Penelope; England, Rosie; Fadzelmulla-Moreno, Carmen; Thompson, Paul A.; Boer, Harm; Langdon, Peter E; Coventry and Warwickshire Partnership NHS Trust; , University of Warwick; University of Birmingham; Learning Disabilities and Autism Services, West Midlands; Herefordshire and Worcestershire Health and Care NHS Trust; Birmingham Community Healthcare NHS Foundation Trust; Learning Disabilities; Medical and Dental; McKenna, Penelope; England, Rosie; Boer, Harm
Introduction: The aim of this study was to examine factors associated with length of stay within a psychiatric hospital for patients with intellectual disabilities who have a forensic history. Methods: Data about 111 patients were gathered retrospectively from historical records for the period of February 2011 to March 2021. Negative binomial regression was then used to examine the relationship between selected predictor variables and length of stay. Results: Patients who were older upon admission and those who had received psychological therapies or positive behavioural support (PBS) had a significantly longer length of stay. Those with a diagnosis of a neurodevelopmental disorder had a significantly shorter length of stay. All other predictors were not statistically significant. Conclusions: There was evidence of a clinical improvement at discharge and those with autism or ADHD had a shorter length of stay. Similar studies with larger sample sizes should be completed across England.
A novel way to understand and communicate the burden of Antipsychotic Prescribing for Adults across Specialist Intellectual Disability Services in England and Wales: the APHID feasibility study protocol
(Frontiers Media, 2025) Stanyard, Emily; Neilens, Helen; Allgar, Victoria; Bailey, Matthew; Musicha, Crispin; Purandare, Kiran; Perera, Bhathika; Roy, Ashok; sawhney, indermeet; Watkins, Lance; Jaydeokar, Sujeet; Lennard, Sarah; Mitchell, Sarah; McGowan, Paula; Laugharne, Richard; Tromans, Samuel; Shankar, Rohit; University of Plymouth; Central and North West London NHS Foundation Trust; University College London; Coventry and Warwickshire Partnership NHS Trust; Hertfordshire Partnership University NHS Foundation Trust; University of South Wales; Cheshire and Wirral Partnership, NHS Foundation Trust; Cornwall Partnership NHS Foundation Trust; University of Leicester; Peninsula Medical School, Faculty of Medicine and Dentistry, University of Plymouth; Intellectual Disabilities; Medical and Dental; Roy, Ashok
BackgroundThe stopping overmedication of people with a learning disability, autism, or both (STOMP) programme was launched in 2016 in response to concerns about the over-prescribing of medication in people with intellectual disability. The programmes focus has been on the withdrawal of antipsychotic treatment for the individual person than the service or dosage optimisation. It could be that cumulative service level antipsychotic treatment converted and presented as chlorpromazine units could allow for comparison of services on how antipsychotic treatment is being utilised and allow for comparing of practices between services in different regions. The aim of this feasibility study is to explore if cumulative service scores of antipsychotic treatment burden could define prescribing patterns across different specialist intellectual disability services in England and Wales, focused on those on ≥2 antipsychotic treatments. There is no evidence to use ≥2 antipsychotic treatments for any individual.MethodsThe study is a feasibility cross-sectional study investigating service antipsychotic treatment cumulative burden at seven annual time points, 2017-2023. De-identified data for adult patients with intellectual disability under the care of specialist intellectual disability services in receipt of ≥2 oral and/or long-acting IM (intramuscular) injectable (depot) antipsychotic treatments are included. Demographic and clinical data will be collated, in addition to information on the prescribed antipsychotic treatments. The data will be evaluated for data completeness and will be inputted into the Statistical Process Control tool. Outcomes will be measured using a combination of methods including descriptive analysis (including mean, standard deviation and percentage values), and a mixed effects regression model, to determine changes in chlorpromazine equivalent dose values over time. ResultsSeven England and Wales National Health Service intellectual disability services are recruiting up to 490 people. There were recognised challenges in identifying the relevant eligible cohort across services and administering a common set of outcome measures. Discussion This study is intended to inform decisions to design a wider registry that would involve antipsychotic treatment prescribing data for patients across multiple sites nationwide. Developing a de-identified database using routinely collected data, without the requirement for informed consent, comes with unique benefits and challenges.
Telepsychiatry in intellectual disability psychiatry: literature review
(Cambridge University Press, 2019-03-07) Madhavan, Giri; Coventry and Warwickshire Partnership NHS Trust; Psychiatry; Medical and Dental; Madhavan, Giri
Aims and Method The aims of this review were to explore the effectiveness and patient and provider acceptability of telepsychiatry consultations in intellectual disability, contrasting this with direct face-to-face consultations and proposing avenues for further research and innovation. Computerised searches of databases including AMED and EMBASE were conducted. Results Four USA studies of intellectual disability telepsychiatry services have been reported. The majority (75%) focused on children with intellectual disability. Sample sizes ranged from 38 to 900 participants, with follow-up from 1 to 6 years. Outcome measures varied considerably and included cost savings to patients and healthcare providers, patient and carer satisfaction and new diagnoses. Clinical implications The innovations summarised suggest a requirement to further explore telepsychiatry models. Despite some promising outcomes, there is a relative dearth in the existing literature. Further studies in other healthcare systems are required before concluding that telepsychiatry in intellectual disability is the best approach for providing psychiatric services to this population.
Characterisation of quality-of-life and it’s utility as a descriptor of health outcomes for people with profound intellectual disabilities
(Elsevier, 2025) Ballard, S; Coventry and Warwickshire Partnership NHS Trust; Learning Disabilities; Medical and Dental; Ballard, S
The purpose of this review is to source the available evidence about quality-of-life for people with profound intellectual disability, identify the tools used to assess and measure this, explore the research methods used to study this, and identify any gaps in knowledge.
Correlates for the risk of specialist ID hospital admission for people with intellectual disabilities: development of the LDNAT inpatient index
(Emerald, 2018-01) Painter, Jon; Ingham, Barry; Trevithick, Liam; Hastings, Richard P; Roy, Ashok; Sheffield Hallam University; Northumberland Tyne and Wear NHS Foundation Trust; Northumbria University; Tees Esk and Wear Valleys NHS Foundation Trust; Warwick University; Monash University; Solihull Community Services, Birmingham; Royal College of Psychiatrists, London; Learning Disabilities; Medical and Dental; Roy, Ashok
Purpose The purpose of this paper is to analyse ratings data from the recently developed Learning Disability Needs Assessment Tool (LDNAT) to identify factors associated with specialist intellectual disability (ID) hospital admissions. Design/methodology/approach Ratings from 1,692 individuals were analysed and the LDNAT items differing significantly between inpatients and non-inpatients were identified. Statistical analyses on total scores derived from these items were used to calculate an optimal cut-off. This LDNAT inpatient index score was also confirmed via an alternative statistical technique. Findings On average, 18 of the 23 LDNAT item ratings were significantly higher in people with ID assessed as inpatients compared to those rated in community settings. Using the total of these items, the resulting LDNAT inpatient index was analysed. A cut-off score of 22.5 was calculated to be the optimal balance between sensitivity (0.833) and specificity (0.750). This was confirmed by calculating the Youden index (j=0.583). At this level 68 per cent of inpatients and 81 per cent of non-inpatient cases were correctly identified. Practical implications Currently there is a national (UK) programme to radically reduce the amount of specialist inpatient care for people ID. This will necessitate early identification of individuals most at risk of admission together with investment in improved, proactive community services if admissions to a diminishing bed-base are to remain manageable. Originality/value This study confirms the associations between mental health difficulties, challenging behaviour and specialist hospital admissions for people with ID, extending existing research by translating these findings into a clinically usable risk index.
Transitional experiences of men with intellectual disabilities and offending histories who have resettled into the community from secure settings
(Emerald, 2025-03-20) Tearle, Shaw; Hickman, Gareth; Hertfordshire Partnership NHS Foundation Trust; Coventry and Warwickshire Partnership NHS Trust; Learning Disabilities - Inpatient Services; Additional Professional Scientific and Technical Field; Hickman, Gareth
Purpose The purpose of this paper is to better understand the transitional experiences of adult men with mild intellectual disabilities (ID) and histories of sexual/violent offending, as they resettle into the community from secure hospital settings. Design/methodology/approach This study used Interpretative Phenomenological Analysis (IPA) to explore the experiences of eight men with mild ID aged between 28 and 60 who, following confinement to secure hospitals under the Mental Health Act for sexual/violent offences, had been living back in the community under conditions of restriction for a minimum of six months and a maximum of 56 months. Two one-to-one semi-structured telephone interviews were conducted with each participant. Findings Three superordinate themes emerged following IPA analysis: “A chance to ‘turn my story around’” (hopefulness about achieving freer community lives and a renewed identity), “Feeling ‘torn apart’” (interpreting numerous losses as abandonment) and “The cost of ‘trying to please others’” (satisfying imposed community restrictions led to a restricted identity). Research limitations/implications These findings suggest that the transitional experience is problematic. It highlights the need for more holistic and psychologically informed support to address the psychosocial needs of men with ID and forensic histories, to then help them achieve improved self-esteem, self-efficacy and meaningful participation during the transition towards community resettlement. Originality/value This paper gives a voice to a marginalised group whilst adding to the literature and addressing the limitations of earlier publications.
Associations Between Mental Health Problems and Challenging Behavior in Adults With Intellectual Disabilities: A Test of the Behavioral Equivalents Hypothesis
(Taylor and Francis Group, 2018) Painter, Jon; Hastings, Richard; Ingham, Barry; Trevithick, Liam; Roy, Ashok; Sheffield Hallam University; University of Warwick; Northumberland Tyne and Wear NHS Foundation Trust; Newcastle University; Tees Esk and Wear Valleys NHS Foundation Trust; Solihull Community Services, Marston Green, Birmingham; Royal College of Psychiatrists; Learning Disabilities; Medical and Dental; Roy, Ashok
Introduction: Current research findings in the field of intellectual disabilities (ID) regarding the relationship between mental health problems and challenging behavior are inconclusive and/or contradictory. The aim of this study was to further investigate the putative association between these two highly prevalent phenomena in people with ID, and specifically to explore the hypothesis that challenging behaviors may be behavioral equivalents of mental health problems. Methods: A sample of 160 adults accessing secondary care ID health services was assessed using five validated measures. These included ratings of severity of disability, mental health problems, autism behaviors, physical health problems, and four different aspects of challenging behavior. In conjunction with demographic information, four multiple regression analyses were undertaken to examine the interaction between mental health problems (moderated by severity of disability) and ratings of overall challenging behavior, aggression, self-injurious behavior, and stereotypy. In each case, age, gender, autism, and physical health problems were included as covariates. Results: There was a statistically significant association between mental health problems and ratings of overall challenging behavior, as well as the moderating effect of severity of disability. Importantly, the positive association between mental health problems and challenging behavior was only significant at more severe levels of disability. Conclusions: These findings support the “behavioral equivalents” hypothesis for mental health problems and challenging behaviors. However, further longitudinal research is required before this hypothesis can be considered unequivocally supported.
Problem behaviours and psychotropic medication use in intellectual disability: a multinational cross-sectional survey
(Wiley, 2018-01-19) Perry, B I; Cooray, S E; Mendis, J; Purandare, K; Wijeratne, A; Manjubhashini, S; Dasari, M; Esan, F; Gunaratna, I; Naseem, R A; Hoare, S; Chester, V; Roy, A; Devapriam, J; Alexander, R; Kwok, H F; University of Warwick; Coventry and Warwickshire Partnership NHS Trust; Imperial College London; National Institute of Mental Health, Angoda, Sri Lanka; Central and North West London NHS Foundation Trust; South West London and St Georges Mental Health Foundation NHS Trust; Humber NHS Foundation Trust; Partnerships in Care, Diss; Leicestershire Partnership NHS Trust; University of Macau; Psychiatry; Medical and Dental; Perry, Benjamin Ian; Roy, Ashok
Background 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.
Dementia And Physical Activity (DAPA) trial of moderate to high intensity exercise training for people with dementia: randomised controlled trial
(BMJ, 2018-05-16) Lamb, Sarah E; Sheehan, Bartholomew; Atherton, Nicky; Nichols, Vivien; Collins, Helen; Mistry, Dipesh; Dosanjh, Sukhdeep; Slowther, Anne-Marie; Khan, Iftekhar; Petrou, Stavros; Lall, Ranjit; Investigators, DAPA Trial; University of Oxford; University of Warwick; Coventry and Warwickshire Partnership NHS Trust; Oxford University Hospitals NHS Foundation Trust; Old Age Psychiatry; Research; Admin and Clerical; Medical and Dental; Atherton, Nicky; Sheehan, Bart
Objective: 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.
Interventions for mental health problems in children and adults with severe intellectual disabilities: a systematic review.
(BMJ, 2018-06-19) Vereenooghe, Leen; Flynn, Samantha; Hastings, Richard P; Adams, Dawn; Chauhan, Umesh; Cooper, Sally-Ann; Gore, Nick; Hatton, Chris; Hood, Kerry; Jahoda, Andrew; Langdon, Peter E; McNamara, Rachel; Oliver, Chris; Roy, Ashok; Totsika, Vasiliki; Waite, Jane; Bielefeld University; University of Warwick; Monash University; Griffith University; University of Central Lancashire; University of Glasgow; University of Kent; Lancaster University; Cardiff University; University of Birmingham; Coventry and Warwickshire Partnership NHS Trust; Aston University; Psychiatry; Medical and Dental; Roy, Ashok
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.
Reflections on introducing a Leavers’ Preparation Group in an intellectual disability secure service
(Emerald Publishing, 2018-07-27) Hickman, Gareth; Booth, Nicola; Hoang, Thuy; Coventry and Warwickshire Partnership NHS Trust; Psychology; Occupational Therapy; Additional Professional Scientific and Technical Field; Allied Health Professional; Hickman, Gareth; Booth, Nicola; Hoang, Thuy
Purpose 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.
Case study illustrations of a psychological treatment pathway in a secure intellectual disability service
(Emerald Publishing, 2018-08-01) Hickman, Gareth; Thrift, Su; Taylor, Chénelle; Coventry and Warwickshire Partnership NHS Trust; North East London NHS Foundation Trust; Clinical Psychology; Additional Professional Scientific and Technical Field; Hickman, Gareth; Thrift, Su
Purpose 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.
The subjective experiences of women with intellectual disabilities and offending behaviour: exploring their experiences of ‘home’
(Taylor & Francis, 2018-06-08) Williams, Emma Marie; Thrift, Su; Rose, John; The University of Birmingham; Coventry and Warwickshire Partnership NHS Trust; St. Andrews Hospital, Northampton; Clinical Psychology; Additional Professional Scientific and Technical Field; Thrift, Su
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.
Phelan-McDermid syndrome, bipolar disorder and treatment with lithium
(Wiley, 2018-06-21) Rowland, Tobias; Pathania, Rani; Roy, Ashok; University of Warwick; Coventry and Warwickshire Partnership NHS Trust; Psychiatry; Medical and Dental; Rowland, Tobias; Pathania, Rani; Ashok, Roy
Background 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.
Under representation of people with epilepsy and intellectual disability in research
(PLOS, 2018-06-21) Shankar, Rohit; Rowe, Charles; Van Hoorn, Alje; Henley, William; Laugharne, Richard; Cox, David; Pande, Raj; Roy, Ashok; Sander, Josemir W.; Cornwall Partnership NHS Foundation Trust; University of Exeter Medical School; Coventry and Warwickshire Partnership NHS Trust; Royal College of Psychiatrists, London; NIHR University College London Hospitals Biomedical Research Centre; UCL Institute of Neurology; Chalfont Centre for Epilepsy; Stichting Epilepsie Instellingen Nederland (SEIN); Psychiatry; Medical and Dental; Roy, Ashok
Purpose 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.
QI 152 To Improve Patient Safety for Those at Risk of Choking in an Inpatient Setting
(Coventry and Warwickshire Partnership NHS Trust, 2024) Brown, Karen; Ochel, Anna; Supported by the Quality Improvement Team, Coventry and Warwickshire Partnership Trust; Coventry and Warwickshire Partnership NHS Trust; Speech and Language Therapy; Allied Health Professional; Brown, Karen; Ochel, Anna
Aim: 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.
Sixteen years of the Brooklands Thinking Skills Offender Programme
(Emerald Publishing, 2017-08-14) Hickman, Gareth; Thrift, Su; Dhaliwal, Rani; Taylor, Chénelle; Coventry and Warwickshire Partnership Trust; Inpatient Services; Medicines Management; Forensic Psychology;; Additional Clinical Services; Additional Professional Scientific and Technical Field; Admin and Clerical; Hickman, Gareth; Thrift, Su; Dhaliwal, Rani; Taylor, Chénelle
Purpose The purpose of this paper is to report on the Brooklands Thinking Skills Offender Programme (BTSOP), a social problem-solving skills group programme developed and provided to people with intellectual disabilities (IDs) detained in conditions of medium and low security. The programme has been running and evolving since 2001 and has undergone consistent development over this time. Within the past five years, there have been significant developments of the Secure Service Treatment Pathway and the current paper describes the integration of the BTSOP within this new pathway model. Design/methodology/approach The programme was evaluated over five years using self-report psychometric measures related to treatment targets. Evaluation data in relation to attrition rates, discharges, transfers, treatment engagement and recidivism are also provided from a 16-year period. The updated treatment pathway and a description of the programme are provided. Findings Results showed statistically significant improvements in Rational Problem Solving, increased internal locus of control and decreased external locus of control. Reflection on the limitations and challenges to outcome assessment in this area is offered. Originality/value This paper builds on the existing evidence base of interventions focused on developing social problem-solving skills in offenders and presents evidence of the effectiveness of such programmes with offenders with IDs.
QI 155 Improve bone health of patients at increased risk of osteoporosis
(Coventry and Warwickshire Partnership NHS Trust, 2024) England, Rosie; Rashid, Ambreen; Freeman, Nicole; Hinze, Serena; Supported by the Quality Improvement Team, Coventry and Warwickshire Partnership Trust; Coventry and Warwickshire Partnership NHS Trust; Learning Disabilities; Medical and Dental; England, Rosie; Rashid, Ambreen; Freeman, Nicole; Hinze, Serena
Aim: To ensure Eden Ward patients have bone risk factors identified, assessed and required interventions applied within 3 months of admission. Epilepsy and a diagnosis of Intellectual Disability have both been shown to independently contribute towards poor bone health and osteoporosis. Decreased bone mineral density and vitamin D deficiency are independent risk factors. Many female inpatients with intellectual disability with and without Epilepsy admitted to a low secure unit have multiple risk factors for poor bone health. This includes admission to secure services, medication, physical inactivity, poor nutrition, smoking, falls/trauma. This increases their overall risk of osteoporosis and fractures. Bone health has not previously been monitored. Tools Used: Staff Questionnaires; PDSA Cycles - https://aqua.nhs.uk/wp-content/uploads/2023/07/qsir-pdsa-cycles-model-for-improvement.pdf Project Impact: 100% of patients on Eden Ward have had their risk factors for bone health assessed (previously this was 0%). Bone health education workshops have been delivered to staff to increase awareness and improve practise. As part of the care plan, appropriate investigations are now being requested and monitored. Next steps will be; 1. Explore if changes can be rolled out to other inpatient wards. 2. New patient admissions to have 1:1 information sessions and completion of bone health care plan within 3 months of admission. 3. Annual audit of Bone Health Care Plans.
Long-term segregation and seclusion for people with an intellectual disability and/or autism in hospitals: critique of the current state of affairs
(Cambridge University Press, 2024-12) Tromans, Samuel; sawhney, indermeet; Odiyoor, Mahesh; de Villiers, Jana; McCarthy, Jane; Boer, Harm; Alexander, Regi; Courtenay, Ken; Wallace, Stuart; Gangadharan, Satheesh; Roy, Ashok; Blake, Amy; Purandare, Kiran; Iyer, Anupama; Laugharne, Richard; Weisner, Vivien; Shankar, Rohit; University of Leicester; Leicestershire Partnership NHS Trust; Hertfordshire Partnership NHS Foundation Trust; Cheshire and Wirral Partnership NHS Foundation Trust; The State Hospital, Lanark, UK; Sussex Partnership NHS Foundation Trust; Coventry and Warwickshire Partnership NHS Trust; Barnet, Enfield and Haringey Mental Health NHS Trust; Legal Directorate, St Andrew's Healthcare, Nottingham; Central and Northwest London NHS Foundation Trust; Cornwall Partnership NHS Foundation Trust; Carer, Coventry, UK; Learning Disabilities; Medical and Dental; Roy, Ashok; Boer, Harm; Blake, Amy
In November 2023, the Department of Health and Social Care published guidance, entitled 'Baroness Hollins' Final Report: My Heart Breaks - Solitary Confinement in Hospital Has no Therapeutic Benefit for People with a Learning Disability and Autistic People'. The report's commendable analysis of the problems and identification of the areas where practice should be improved is unfortunately not matched by many of its recommendations, which appear to be contrary to evidence-based approaches. The concerns are wide-ranging, from the use of the term 'solitary confinement' for current long-term segregation (LTS) and seclusion, to presumption that all LTS and seclusion is bad, to holding clinicians (mainly psychiatrists) responsible for events beyond their locus of control. Importantly, there is a no guidance on how to practically deliver the recommendations in an evidence-based manner. This Feature critically appraises the report, to provide a comprehensive summary outlining potential positive impacts, identifying specific concerns and reflecting on best practice going forward.
Evidencing the challenges of care delivery for people with intellectual disability and epilepsy in England by using the Step Together toolkit
(Royal College of Psychiatrists, 2024-10-28) Shillito, Tom; Watkins, Lance; Ali, Hafsha; Page, Georgina; Pullen, Angie; Mitchell, Sarah; Roy, Ashok; Sen, Arjune; Kinney, Michael; Thomas, Rhys; Tittensor, Phil; Bagary, Manny; Subramanium, Arun; Kent, Bridie; Shankar, Rohit; Epilepsy Action, UK; University of South Wales; Cornwall Intellectual Disability Equitable Research (CIDER); University of Plymouth; Swansea Bay University Health Board; NHS Midlands and Lancashire Commissioning Support Unit; Cornwall Partnership NHS Foundation Trust; Coventry and Warwickshire Partnership NHS Trust; University of Oxford; Belfast Health and Social Care Trust; Newcastle University; The Royal Wolverhampton NHS Trust; Birmingham & Solihull Mental Health Trust; The Southern Health and Social Care Trust, UK;; Learning Disabilities; Medical and Dental; Roy, Ashok
Background: People with intellectual disability (PwID) and epilepsy have increased premature and potentially preventable mortality. This is related to a lack of equitable access to appropriate care. The Step Together guidance and toolkit, developed with patient, clinical, charity and commissioning stakeholders, allows evaluation and benchmarking of essential epilepsy service provision for PwID in eight key domains, at a care system level. Aims: To evaluate care provisions for adult PwID and epilepsy at a system level in the 11 integrated care systems (ICSs) of the Midlands, the largest NHS England region (population: approximately 11 million), using the Step Together toolkit. Method: Post training, each ICS undertook its benchmarking with the toolkit and submitted their scores to Epilepsy Action, a national UK epilepsy charity, who oversaw the process. The outcomes were analysed descriptively to provide results, individual and cumulative, at care domain and system levels. Results: The toolkit was completed fully by nine of the 11 ICSs. Across all eight domains, overall score was 44.2% (mean 44.2%, median 43.3%, range 52.4%, interquartile range 23.8-76.2%). The domains of local planning (mean 31.1%, median 27.5%) and care planning (mean 31.4%, median 35.4%) scored the lowest, and sharing information scored the highest (mean 55.2%, median 62.5%). There was significant variability across each domain between the nine ICS. The user/carer participation domain had the widest variation across ICSs (0-100%). Conclusions: The results demonstrate a significant variance in service provision for PwID and epilepsy across the nine ICSs. The toolkit identifies specific areas for improvement within each ICS and region.

Browse

Recent Submissions