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Background Patients diagnosed with pulmonary embolism (PE) are reported to experience symptoms of posttraumatic stress disorder (PTSD) and existential anxiety following their diagnosis. They may also experience negative changes in perspective and hypervigilance of PE symptoms. Objective The aim of this study was to document the mental and emotional experience associated with PE diagnosis through the lens of PTSD, to better understand the factors involved in psychological distress following receipt of a PE diagnosis. Patients/Methods This was a mixed‐methods study in two parts: (i) measurement of self‐reported PTSD symptoms among patients attending thrombosis clinic and (ii) semistructured interviews with patients about their experience of receiving a diagnosis of PE and its psychological aftermath. Results Of 72 patients who participated in the survey, two met the criteria for a tentative diagnosis of PTSD. The semistructured interviews with 37 patients suggested that around half of respondents experienced some degree of ongoing psychological distress. Those with psychological distress often recalled painful symptoms, recalled diagnosis delivery as stressful, worried about PE recurrence, and had anxieties about stopping their anticoagulant medication. Few patients reported inclination to seek support from professional mental health services. Conclusions We found ongoing and untreated psychological distress among people who were previously diagnosed with PE.

Objective: Self-harm is an important public health issue in the UK. Young people who frequently self-harm feel misunderstood, and unable to access help. Improving understanding is key to informing the development and delivery of effective treatments and services. Methods: In this qualitative study, we interviewed nine adolescent girls (13–17 years old) with recurrent self-harm, recruited from NHS specialist child and adolescent mental health services. Data were analysed using Interpretative Phenomenological Analysis (IPA). Results: Findings revealed that self-harm is experienced as powerful mental and physical urges, sated only by self-harming, suggesting that self-harm could be considered a compulsive rather than impulsive disorder, representing a new perspective on the behaviour. Five themes emerged: emotion regulation, an addictive urge, self-harm to survive, interpersonal triggers, interpersonal relationships, not mechanical distractors, reduce self-harm. Conclusions: This study provides further evidence that non-suicidal self-injury may be engaged in to reduce suicidal risk. Seeking the company of helpful friends or family members may reduce the urge to self-harm. Repetitive self-harm may be a compulsive behaviour.

Background: Crisis intervention services for people with dementia in the United Kingdom are poorly defined with no standardized model of working. This may be due to the lack of a clear conceptualization of dementia crisis, resulting in variation in national service delivery. Methods: This study employed a novel public engagement questionnaire data collection technique with 57 participants to gain an updated perspective on the concept of health-related crisis from the point of view of the public. Results: Analysis revealed crisis as a transformational moment that may arrive unexpectedly but could also be the culmination of a sequence of events. Crisis resolution requires external and expert help, and associated feelings of panic and despair can engender the task of resolution by oneself insurmountable. Conclusions: Participants had clear expectations of crisis intervention services, with initial practical and emotional support to reduce risks, and a person-centered approach with family involvement.

Background: Mealtime support has a direct bearing on the diet-related health of men and women with intellectual disabilities as well as opportunities for expressing dietary preferences. Method: Semi-structured interviews with a sample of direct support staff providing mealtime support to adults with intellectual disabilities. Results: When managing tensions between a person's dietary preferences and ensuring safe and adequate nutrition and hydration, direct support staff are sensitive to a wide range of factors. These include the following: clinical advice; service users’ rights to choose; their (in)capacity to weigh up risks; how service users communicate; the constituents of a healthy diet; and a duty to protect service users' health. Conclusions: Those responsible for setting standards and regulating the care practices need to look beyond too simple ideas of choice and safety to recognize ways in which providing support at mealtimes is a complex activity with serious consequences for people's health and well-being.

This paper presents independent research commissioned by the National Institute for Health Research (NIHR) under its Research for Patient Benefit (RfPB) programme (grant reference number PB-PG-0906-11098). The views expressed are those of the authors and not necessarily those of the NHS, the NIHR or the Department of Health. Simon R. White was supported by the Medical Research Council (Unit Programme number U105292687).

Objectives To understand the views of qualified medical practitioners regarding “reasonable adjustments” and the quality of the care and treatment provided to adults with intellectual disabilities when admitted to acute hospitals as inpatients. Methods Semi‐structured interviews took place with 14 medical practitioners, seven from each of two acute hospitals, with a thematic analysis of the resulting data. Results All 14 medical practitioners reported problems in the diagnosis and treatment of patients with intellectual disabilities. Most participants attributed these difficulties to communication problems and/or behaviours that, in the context of a hospital ward, were non‐conforming. However, a minority reported that, because they were likely to have multiple comorbid health conditions, patients with intellectual disabilities were more complex. In addition, half of all these respondents reported making little use of “reasonable adjustments” introduced to improve the quality of the care received by this group of patients. Conclusions Medical practitioners should make better use of the “reasonable adjustments” introduced in the UK to address inequities in care and treatment received by patients with intellectual disabilities. However, training should also focus on the biomedical complexities often presented by these men and women.

Background: The development of a nurse-led approach to managing epilepsy in adults with an intellectual disability offers the potential of improved outcomes and lower costs of care. We undertook a cluster randomised trial to assess the impact on costs and outcomes of the provision of intellectual disability nurses working to a designated epilepsy nurse competency framework. Here, we report the impact of the intervention on costs. Method: Across the UK, 8 sites randomly allocated to the intervention recruited 184 participants, 9 sites allocated to treatment as usual recruited 128 participants. Cost and outcome data were collected mainly by telephone interview at baseline and after six months. Total costs at six months were compared from the perspective of health & social services, and society, with adjustments for pre-specified participant and cluster characteristics at baseline including costs. Missing data was imputed using Multiple Imputation. Uncertainty was quantified by bootstrapping. Results: The intervention was associated with lower per participant costs from a health & social services perspective of -£357 (2014/15 GBP) (95% CI -£986, £294) and from a societal perspective of -£631 (95% CI -£1,473, £181). Results were not sensitive to the exclusion of accommodation costs. Conclusions: Our findings suggest that the competency framework is unlikely to increase the cost of caring for people with epilepsy and intellectual disability and may reduce costs., This paper presents independent research commissioned by the National Institute for Health Research (NIHR) under its Health Technology Assessment Programme (Grant 10/104/16 PI Dr H Ring). During the time that this research was carried out, H Ring also received support from the NIHR Collaboration for Leadership in Applied Health Research and Care (CLAHRC) East of England at Cambridgeshire and Peterborough NHS Foundation Trust.

Background: In the UK, the closure of ‘long-stay’ hospitals was accompanied by the development of community teams (CTs) to support people with intellectual disabilities (IDs) to live in community settings. The self-reported experiences of staff working in such teams has been neglected. Methods: Focusing on a single county-wide service, comprising five multi-disciplinary and inter-agency CTs, we measured perceptions among the health care and care management team members of (i) their personal well-being (Maslach Burnout Inventory (MBI) Maslach and Jackson, 1981); (ii) the functioning of their team (Team Climate Inventory (TCI) Anderson and West, 1994) and (iii) organisational commitment to quality and culture (the Quality Implementation Improvement Survey – II (QIIS-II, Shortell et al., 1995, 2000). Results: Almost three-quarters of the questionnaires were returned (73/101; 72%). The scores of health care and care managers were very similar: the MBI scores of more than half the respondents were ‘of concern’; (ii) similarly, almost four in ten respondents’ scores on the Vision scale were ‘of concern’; (iii) the perceived commitment to quality (QIIS-II Part 2) was uncertain; and (iv) the organisational culture (QIIS-II, Part 1) was viewed as primarily hierarchical. Discussion: The perceived absence of a vision for the service, combined with a dominant culture viewed by its members as strongly focussed on bureaucracy and process, potentially compromises the ability of these CTs to respond proactively to the needs of people with IDs. Given the challenges that changes in legislation, policy, and practice that have taken place since CTs were established, it would be timely to revisit their role and purpose.

Purpose This commentary takes the article, “Participation of adults with learning disabilities in the 2015 United Kingdom General Election”, as a jumping-off point for considering a tension between the aim of full and equal equality for all people with disabilities as set out in the Convention on the Rights of Persons with Disabilities and more traditional beliefs, that on occasion, it is necessary to deny legal autonomy of men and women with intellectual disabilities in order to protect them. The paper aims to discuss these issues. Design/methodology/approach This issue is explored by reviewing the multiple and often conflicting ways in which disability and intellectual disability are conceptualised. Findings Given the multiple and contradictory ways in which both disability and intellectual disability are understood, any discussion of the rights of persons with disabilities is going to be highly problematic. Originality/value Equal recognition before the law and the presumption that all persons with intellectual disabilities can – with support – make autonomous decisions could be treated as an empirical question.

BackgroundPeople with an intellectual (learning) disability (ID) and epilepsy have an increased seizure frequency, higher frequencies of multiple antiepileptic drug (AED) use and side effects, higher treatment costs, higher mortality rates and more behavioural problems than the rest of the population with epilepsy. The introduction of nurse-led care may lead to improvements in outcome for those with an ID and epilepsy; however, this has not been tested in a definitive clinical trial.ObjectiveTo determine whether or not ID nurses, using a competency framework developed to optimise nurse management of epilepsy in people with an ID, can cost-effectively improve clinical and quality-of-life outcomes in the management of epilepsy compared with treatment as usual.DesignCluster-randomised two-arm trial.SettingCommunity-based secondary care delivered by members of community ID teams.ParticipantsParticipants were adults aged 18–65 years with an ID and epilepsy under the care of a community ID team and had had at least one seizure in the 6 months before the trial.InterventionsThe experimental intervention was the Learning Disability Epilepsy Specialist Nurse Competency Framework. This provides guidelines describing a structure and goals to support the delivery of epilepsy care and management by ID-trained nurses.Main outcome measuresThe primary outcome was the seizure severity scale from the Epilepsy and Learning Disabilities Quality of Life questionnaire. Measures of mood, behaviour, AED side effects and carer strain were also collected. A cost–utility analysis was undertaken along with a qualitative examination of carers’ views of participants’ epilepsy management.ResultsIn total, 312 individuals were recruited into the study from 17 research clusters. Using an intention-to-treat analysis controlling for baseline individual-level and cluster-level variables there was no significant difference in seizure severity score between the two arms. Altogether, 238 complete cases were included in the non-imputed primary analysis. Analyses of the secondary outcomes revealed no significant differences between arms. A planned subgroup analysis identified a significant interaction between treatment arm and level of ID. There was a suggestion in those with mild to moderate ID that the competency framework may be associated with a small reduction in concerns over seizure severity (standard error 2.005, 95% confidence interval –0.554 to 7.307;p = 0.092). However, neither subgroup showed a significant intervention effect individually. Family members’ perceptions of nurses’ management depended on the professional status of the nurses, regardless of trial arm. Economic analysis suggested that the competency framework intervention was likely to be cost-effective, primarily because of a reduction in the costs of supporting participants compared with treatment as usual.LimitationsThe intervention could not be delivered blinded. Treatment as usual varied widely between the research sites.ConclusionsOverall, for adults with an ID and epilepsy, the framework conferred no clinical benefit compared with usual treatment. The economic analysis suggested that there may be a role for the framework in enhancing the cost-effectiveness of support for people with epilepsy and an ID. Future research could explore the specific value of the competency framework for those with a mild to moderate ID and the potential for greater long-term benefits arising from the continuing professional development element of the framework.Trial registrationCurrent Controlled Trials ISRCTN96895428.FundingThis trial was funded by the NIHR Health Technology Assessment programme and will be published in full inHealth Technology Assessment; Vol. 22, No. 10. See the NIHR Journals Library website for further project information.

Introduction: Pulmonary embolism (PE) is a treatable condition, with a low mortality rate (of around 1% in those who are diagnosed with the condition). The risk of recurrent PE is well managed with long term anticoagulation. Past literature suggests that patients who are diagnosed with PE can go on to experience existential anxiety and symptoms suggestive of post-traumatic stress disorder (PTSD). This study aimed to evaluate the mental and emotional experiences of PE patients through the lens of PTSD, and the factors involved in psychological distress following a PE diagnosis. Methods: Semi-structured interviews were conducted with PE patients at the Juravinski Hospital thrombosis clinic in Hamilton, Ontario. Interview questions were based on DSM-5 criteria of PTSD and relevant existing literature. The transcripts were analyzed by two researchers based on an approach that considers both the content of patients’ accounts as well as the way that patients choose to interpret and deliver those accounts, to develop major themes associated with psychological distress. Results: A total of 37 patients, ranging from 28 to 85 years of age, were interviewed. The patients’ accounts suggested that the manner in which a PE diagnosis was delivered by an emergency physician was a significant factor in the degree to which they experienced psychological distress. For example, patients reported focusing on words suggesting that they were ‘a ticking time-bomb’ or that ‘a lot of people don't get through this,’ which introduced a degree of panic. A number of patients continued to focus on these words, months or years after their diagnosis. Some feared that they could have recurrent PE which could lead to death. Diagnoses that were delivered calmly with thorough explanations of why a patient experienced PE-related symptoms and how they will be treated, helped to minimize any subsequent anxiety. Patients initially misdiagnosed with an alternative condition in the ED also expressed feelings of anxiety and distress. The presence of physically and mentally distressing symptoms was also a factor which contributed to mental distress and anxiety regarding a PE recurrence. Conclusion: Caution should be taken in the delivery of PE diagnosis in the emergency department. Over-emphasis on the severity and life-threatening nature of PE should be avoided to reduce psychological distress.

Background This study aims to use 30-day readmission rates to investigate the presumption that men and women with learning disabilities (LDs, known internationally as intellectual disabilities) receive poorer quality hospital care than their non-disabled peers. Method A 12-month retrospective audit was conducted using Hospital Episode Statistics (HES) at a single acute hospital in the East of England. This identified all in-patient admissions; admissions where the person concerned was recognised as having a LD; and all emergency readmissions within 30 days of discharge. Additionally, the healthcare records of all patients identified as having a LD and readmitted within 30 days as a medical emergency were examined in order to determine whether or not these readmissions were potentially preventable. Results Over the study period, a total of 66 870 adults were admitted as in-patients, among whom 7408 were readmitted as medical emergencies within 30 days of discharge: a readmission rate of 11%. Of these 66 870 patients, 256 were identified as having a LD, with 32 of them experiencing at least one emergency readmission within 30 days: a readmission rate of 13%. When examined, the healthcare records pertaining to these 32 patients who had a total of 39 unique 30-day readmissions revealed that 69% (n = 26) of these readmissions were potentially preventable. Conclusion Although overall readmission rates were similar for patients with LDs and those from the general population, patients with LDs had a much higher rate of potentially preventable readmissions when compared to a general population estimate from van Walraven et al. This suggests that there is still work to be done to ensure that this patient population receives hospital care that is both safe and of high quality.

BackgroundIntellectual disability (ID) is relatively common in people with epilepsy, with prevalence estimated to be around 25%. Surprisingly, given this relatively high frequency, along with higher rates of refractory epilepsy than in those without ID, little is known about outcomes of different management approaches/clinical services treating epilepsy in adults with ID-we investigate this area.Materials & methodsWe undertook a naturalistic observational cohort study measuring outcomes in n = 91 adults with ID over a 7-month period (recruited within the period March 2008 to April 2010). Participants were receiving treatment for refractory epilepsy (primarily) in one of two clinical service settings: community ID teams (CIDTs) or hospital Neurology services.ResultsThe pattern of comorbidities appeared important in predicting clinical service, with Neurologists managing the epilepsy of relatively more of those with neurological comorbidities whilst CIDTs managed the epilepsy of relatively more of those with psychiatric comorbidities. Epilepsy-related outcomes, as measured by the Glasgow Epilepsy Outcome Scale 35 (GEOS-35) and the Epilepsy and Learning Disabilities Quality of Life Scale (ELDQoL) did not differ significantly between Neurology services and CIDTs.DiscussionIn the context of this study, the absence of evidence for differences in epilepsy-related outcomes amongst adults with ID and refractory epilepsy between mainstream neurology and specialist ID clinical services is considered. Determining the selection of the service managing the epilepsy of adults with an ID on the basis of the skill sets also required to treat associated comorbidities may hence be a reasonable heuristic.

Background Advances in medical genetics herald the possibility that health and social care services could be more responsive to the needs arising from a person's genotype. This development may be particularly important for those men and women whose learning disability (known internationally as intellectual disability) is linked to a neurodevelopmental condition of genetic origin. Method This possibility is tested through interviews with samples of (i) professional ‘opinion former’ with nationally recognised clinical and/or academic interests in learning disabilities and genetics; (ii) representatives of syndrome organisations prompting the interests of families where someone has a neurodevelopmental condition, and parent-members of these same organisations. Results The reporting and discussion of the interview data considers the possibility that notwithstanding the successes of the social model of disability, the health and wellbeing of people whose learning disability is associated with a neurodevelopmental condition could be better served by a more medicalised approach to their interests. Conclusion While a more medicalised approach to this populations’ disabilities would appear to be beneficial, so long as it is focused on interventions to improve their lives rather than catalogues their deficiencies.

Background In adults with intellectual disability (ID) and epilepsy there are suggestions that improvements in management may follow introduction of epilepsy nurse-led care. However, this has not been tested in a definitive clinical trial and results cannot be generalised from general population studies as epilepsy tends to be more severe and to involve additional clinical comorbidities in adults with ID. This trial investigates whether nurses with expertise in epilepsy and ID, working proactively to a clinically defined role, can improve clinical and quality of life outcomes in the management of epilepsy within this population, compared to treatment as usual. The trial also aims to establish whether any perceived benefits represent good value for money. Methods/design The EpAID clinical trial is a two-arm cluster randomised controlled trial of nurse-led epilepsy management versus treatment as usual. This trial aims to obtain follow-up data from 320 participants with ID and drug-resistant epilepsy. Participants are randomly assigned either to a ‘treatment as usual’ control or a ‘defined epilepsy nurse role’ active arm, according to the cluster site at which they are treated. The active intervention utilises the recently developed Learning Disability Epilepsy Specialist Nurse Competency Framework for adults with ID. Participants undergo 4 weeks of baseline data collection, followed by a minimum of 20 weeks intervention (novel treatment or treatment as usual), followed by 4 weeks of follow-up data collection. The primary outcome is seizure severity, including associated injuries and the level of distress manifest by the patient in the preceding 4 weeks. Secondary outcomes include cost-utility analysis, carer strain, seizure frequency and side effects. Descriptive measures include demographic and clinical descriptors of participants and clinical services in which they receive their epilepsy management. Qualitative study of clinical interactions and semi-structured interviews with clinicians and participants’ carers are also undertaken. Discussion The EpAID clinical trial is the first cluster randomised controlled trial to test possible benefits of a nurse-led intervention in adults with epilepsy and ID. This research will have important implications for ID and epilepsy services. The challenges of undertaking such a trial in this population, and the approaches to meeting these are discussed. Trial registration International Standard Randomised Controlled Trial Number: ISRCTN96895428 version 1.1. Registered on 26 March 2013. Electronic supplementary material The online version of this article (doi:10.1186/s13063-016-1429-7) contains supplementary material, which is available to authorized users.

Healthcare for men and women with learning disabilities (known internationally as intellectual disabilities) has risen up the political agenda in the United Kingdom, propelled by a report from the charity Mencap. This report has resulted in renewed efforts, set out in Valuing People Now, to ensure that people with learning disabilities receive the healthcare they are entitled to. This paper, drawing upon experience in England, describes the challenges of providing healthcare to men and women with learning disabilities; reviews Death by Indifference and the reports produced in its aftermath; presents findings from a small-scale study of access to healthcare undertaken in the East of England; and concludes with a discussion of whether the policies in Valuing People Now will improve healthcare for men and women with learning disabilities.

Background Patients with intellectual disabilities (ID) receive health care by proxy. It is family members and/or paid support staff who must recognise health problems, communicate with clinicians, and report the benefits, if any, of a particular treatment. At the same time international and national statutes protect and promote the right of people with disabilities to access the highest attainable standards of health on the basis of free and informed consent. Methods To consider the role of parent-proxies in the management of epilepsy in adult children with ID who are at risk of lacking capacity to make decisions about their health care we interviewed 21 mothers. Findings These mothers are not pursuing changes in treatment that might improve their son or daughter's epilepsy, nor are they willing to countenance changes in treatment. Clinicians concerned to build and sustain therapeutic alliances with these mothers, our evidence suggests, may well avoid going against their wishes. Discussion Our research highlights the interactional contingencies of a hitherto neglected three-way clinical relationship comprising parent-proxy, an adult at risk of lacking decision-making capacity, and a treating clinician. This is a relationship, our findings suggest, where little importance is attached to either patient consent, or involvement in treatment decisions.

Background For many adults with an intellectual disability (ID), mealtimes carry significant health risks. While research and allied clinical guidance has focused mainly on dysphagia, adults with a range of physical and behavioural difficulties require mealtime support to ensure safety and adequate nutrition. The extent of need for and nature of such support within the wider ID population has yet to be reported. Methods In this study, we have estimated the prevalence of need for mealtime support among people with ID in the UK, using a population of 2230 adults known to specialist ID services (in Cambridgeshire, UK, total population 586 900). In a sample (n = 69, aged 19 to 79 years, with mild to profound ID), we characterised the support provided, using a structured proforma to consult support workers and carers providing mealtime support, and health and social care records. Results Mealtime support was found to be required by a significant minority of people with ID for complex and varied reasons. Prevalence of need for such support was estimated at 15% of adults known to specialist ID services or 56 per 100 000 total population. Within a sample, support required was found to vary widely in nature (from texture modification or environmental adaptation to enteral feeding) and in overall level (from minimal to full support, dependent on functional skills). Needs had increased over time in almost half (n = 34, 49.3%). Reasons for support included difficulties getting food into the body (n = 56, 82.2%), risky eating and drinking behaviours (n = 31, 44.9%) and slow eating or food refusal (n = 30, 43.5%). These proportions translate into crude estimates of the prevalence of these difficulties within the known ID population of 11.9%, 6.6% and 6.4% respectively. Within the sample of those requiring mealtime support, need for support was reported to be contributed to by the presence of additional disability or illness (e.g. visual impairment, poor dentition and dementia; n = 45, 65.2%) and by psychological or behavioural issues (e.g. challenging behaviour, emotional disturbance; n = 36, 52.2%). Conclusions These findings not only highlight the need for a multidisciplinary approach to mealtime interventions (paying particular attention to psychological and environmental as well as physical issues), but also signal the daily difficulties faced by carers and paid support workers providing such support and illustrate their potentially crucial role in managing the serious health risks associated with eating and drinking difficulties in this population.

The authors analyzed references to “friendship” in the documents that set out the policy vision for adults with intellectual disabilities living in England. Friendship is commonly identified as one of the human “goods”—those aspects of life that contribute to our flourishing. Disability ethicists have suggested that friendship is especially important for people with the most profound intellectual and multiple disabilities, as a means of establishing their social and moral standing. However, the idea of friendship with adults with profound disabilities is problematic if friendship is defined as it is commonly understood in the contemporary English context. Citizenship and rights have dominated policy discourse since the publication of the English intellectual disabilities strategy, Valuing People, in 2001. However, recent policy documents give greater prominence to friendship and frame it explicitly as a “good” in the lives of adults with profound disabilities. The language used in these policy documents signals but does not openly acknowledge the tensions and complexities entailed in the idea of friendship with adults with profound disabilities. The authors suggest that the failure to address these tensions and complexities is a recipe for failure in the implementation of policy recommendations. They note the need for policy in this area to be reconsidered and suggest that this process should be informed by both empirical research and conceptual analysis.

Background In the UK those paid to support adults with intellectual disabilities must manage two potentially conflicting duties that are set out in policy documents as being vital to their role: protecting service users (their duty of care) and recognising service users' autonomy. This study focuses specifically on the support of people with the genetically determined condition, Prader–Willi syndrome (PWS). Due to the behaviours associated with PWS, the support of this group of people vividly illustrates the tension between respect for autonomy and duty of care. This article explores how support workers working in a residential group home managed their competing duties of managing risk and promoting independence in practice. Methods An ethnographic study, comprising of qualitative observations, semi-structured interviews and documentary analysis, was undertaken to investigate the work of support workers in a UK residential group home specialising in the support of adults diagnosed with PWS. The study focused on how support workers attempted to reconcile the tension between protecting service users from the risks associated with the syndrome and acknowledging service users' autonomy by enabling independence. Results Findings demonstrate that risk was central to the structure of care delivery at the group home and support workers often adhered to standardised risk management procedures. The organisation also required support workers to promote service users' independence and many thought acknowledging service users' autonomy through the promotion of their independence was important. To manage tensions between their differing duties, some support workers deviated from standardised risk management procedures to allow service users a degree of independence. Conclusions There is a tension between the duty of care and the duty to recognise autonomy at the level of service delivery in residential homes. Support workers attempt to manage this tension; however, further work needs to be done by both residential services and policy makers to facilitate the reconciliation of the duty of care with the duty to recognise service users' autonomy in practice.

Contemporary welfare is closely linked to policies designed to foster individual responsibility and self-development. This agenda, however, encounters problems when adults lack the capacity to make decisions about their lives, and/or are unable to protect themselves from the malign actions of their fellow citizens. These problems are addressed by the 2005 Mental Capacity Act (England and Wales) and adult safeguarding procedures. Specifically, the 2005 Mental Capacity Act (England and Wales) (MCA) introduced a statutory advocacy service, which empowers local authorities to appoint an Independent Mental Capacity Advocate (IMCA) to represent the interests of adult lacking capacity to make decisions about adult safeguarding procedures. This paper presents (i) a general overview of the development of adult safeguarding and the introduction of the MCAs IMCA service into these procedures; (ii) findings from a research project investigating the integration of IMCAs into these procedures; and (iii) a discussion of the challenges facing IMCAs involved in adult safeguarding procedures. © 2010 The Author.

Objectives To determine the extent and nature of the decisions individuals are asked to make as in-patients, and whether doctors, nurses, other health care practitioners, and housekeepers engaged in routine (non-emergency) medical assessments, investigations and treatments, or acts of personal care observe the Reference Guide to Consent for Examination or Treatment, the principles of the Mental Capacity Act (England and Wales) 2005, and the guidance from the Dignity in Care Campaign. Methods Hospital staff working on a general medical ward and a ward for older people in a large teaching hospital in England were observed for over 50 hours carrying out acts of medical and personal care. The observations were recorded using a semi-structured record sheet, complemented by unstructured field notes. Observations were subsequently categorized, coded and counted. Results A total of 206 acts were observed, 127 (62%) of which were acts of medical care and 79 (38%) were acts of personal care. Patients approached for acts of personal care were generally presented with choices and options (78%). In contrast, when approached for acts of medical care, they were rarely presented with a choice (6%); instead, health care practitioners either requested permission to perform a procedure (29%) or informed patients that they were about to perform a procedure (50%). Irrespective of the way in which health care practitioners approached patients about acts of medical care, in the overwhelming majority of instances, patients complied (80%, 99 cases), either by giving permission for the act to be performed, or by complying and/or cooperating with the health care practitioner. In only a minority of cases did patients either refuse or resist a proposed procedure (9%). Conclusions Patients were asked to make many varied decisions and the approaches taken by hospital staff differed depending on the nature of the decision and/or act in question. In contrast to personal care decisions, when health care practitioners approached patients in order to undertake routine acts of medical care, they generally did so in a manner that did not acknowledge that the patient had a right to exercise a choice. This is contrary to current law, policy and guidance. It seems to be rooted in the practical demands of running a hospital ward and uncertainties as to the purpose of securing patient consent before undertaking routine acts of medical care.

Based upon qualitative interviews with clinicians responsible for assessing patients admitted to hospital following an episode of self-harm by overdose, this paper documents interactional factors that shape both how clinicians conduct these assessments and their understanding of what 'causes' someone to harm themselves. The analysis first documents how the patients' overdoses are framed as essentially impulsive acts committed in response to adverse circumstances. This is achieved by clinicians' avoidance of any engagement with, or assessment of, a patient's reasons for taking an overdose. Secondly, the analysis considers why the patients' reasons for taking an overdose do not feature in the clinicians' assessments, and shows, by an examination of two deviant cases, that clinicians avoid engaging with patients' motivations so as to: minimise the risk of generating bedside disagreements; avoid the possibility of being drawn into the emotional life of a patient, and shield themselves from the social and economic inequalities that are a feature of many patients' lives. The paper concludes with a discussion of how bedside assessments that do not engage with patients' reasons for taking an overdose might be experienced by the patients themselves and the deleterious effect this could have upon their clinical management.

Despite the UK’s recent history of promoting the social inclusion and equality of men and women with learning disabilities they remain a significantly disadvantaged group. Compared with their non‐disabled peers they are more likely to be unemployed, less likely to own their own homes and are at a significantly greater risk of physical and mental ill health. The first part of this paper discusses the welfare rights of citizens with learning disabilities in terms of New Labour’s welfare to work policies. The second part discusses the UK’s mixed welfare economy and its impact upon services for men and women with learning disabilities. The paper concludes by considering whether the social inclusion of men and women with learning disabilities can be promoted solely through policies that emphasise inclusion through work and the personalisation of welfare services.

This paper asks, in the context of recent legislative changes, what can be done to support more citizens in England and Wales with learning disabilities to vote in national elections? This issue is addressed through (i) a review of recent disability access campaigns that have reported discrimination against, and the under‐representation of, adults with disabilities in UK elections; (ii) a review of recent research undertaken in the USA into the assessment of competence to vote and research undertaken in England that conclusively documents the under‐representation of voters with learning disabilities in the 2005 general election. It is proposed that a ‘functional approach’ to developing an individual's capacity to vote could help to fulfil Article 29 of the United Nations' Convention on the rights of persons with disabilities that gives all people the same political rights.

Objectives To examine attitudes to the Mental Capacity Act's new statutory Independent Mental Capacity Advocate (IMCA) service in England and Wales and consider the implications for its delivery. Methods Quantitative data describing all referrals to the seven pilot IMCA services (January 2006-March 2007) and qualitative data from semi-structured interviews with 18 doctors, 21 senior nurses and one discharge planning manager in four general hospitals in England. Results Of 127 hospital-based referrals to the seven pilot IMCA services, 29 (23%) were for patients facing serious medical treatments, 52% of whom were judged to lack decisionmaking capacity due to a learning disability; ninety-eight (77%) were for patients facing a change of accommodation upon hospital discharge, 62% of whom were elderly and lacked capacity due to dementia. While aware of the potential benefits of the IMCA service, clinicians were generally negative about the contribution advocates could make to patients’ medical care and thought they could only contribute usefully in a minority of ethically complicated decisions. In contrast, they were more positive about the involvement of advocates in hospital discharge decisions and hoped that they would improve current discharge practice. Conclusions Clinicians held ambivalent attitudes towards the involvement of a statutory IMCA service in medical decisions, reflecting beliefs that the service was largely impractical and unnecessary given current procedures for making medical decisions in patients’ ‘best interests’. Conversely, clinicians were more likely to support advocacy in discharge decisions because they believed that non-medically qualified advocates could make a valuable contribution to decisions that were seen as predominantly social and where practice was frequently considered deficient. By holding these beliefs, clinicians are failing to have due regard for the IMCA service as a statutory measure for safeguarding patients’ interests.

Background International and UK legislation confirms and supports the right of adults with intellectual disabilities (ID) to vote. It is widely accepted, although not previously empirically confirmed, that citizens with ID are under-represented at the polls. Method To document the extent of their under-representation at the polls, the names and addresses of adults using services for people with ID in one county in the UK, were compared with the marked electoral register following the 2005 general election. Adults using services for people with ID were identified either as un-registered, as registered to vote but not having voted, or as having voted. Results Adults with ID living in the county at the time of 2005 general election were substantially under-represented at the polls. Compared with the general population, proportionally fewer of them were registered to vote, and proportionally fewer of them voted. Compared with adults living in private homes, those in supported accommodation were more likely to be registered to vote, but less likely to use their vote. The most significant predictor of participation was living in a household with at least one other active voter. Conclusions The importance of the close proximity of an active voter is likely to be different for adults in supported accommodation compared with those living in private households. Further research is required to understand what features of these two very different types of residences are affecting voting opportunities.

Recent policy initiatives have moved decisively toward empowering learning disabled citizens, recognising ability over disability, and promoting people's political empowerment and voice in the design of public services. While laudable and encouraging, these initiatives raise an important question: to what extent can a group of service users, whose very entitlement to state-sponsored assistance is justified by putative intellectual impairment, be empowered according to an exclusively liberal model of citizenship that presumes and requires, as its very defining features, intellectual ability and independence? In this paper we consider this question by means of an ethnographic analysis of an innovative advocacy group: the Parliament for People with Learning Disabilities (PPLD). We first document both an institutional and an interactional preference for clients to speak actively for themselves. We then describe three types of interactional trouble that emerged in the PPLD as obstacles to realising this preference in practice and the strikingly similar remedies that were generated to overcome these troubles. We conclude by discussing the limits of an approach to empowering learning disabled individuals that is cast too exclusively in terms drawn from liberal models of citizenship that prioritise voice over care, security, and wellbeing.

Background Adults with intellectual disabilities (ID) experience a wide range of eating, drinking and/or swallowing (EDS) problems, for which they receive diverse mealtime support interventions. Previous research has estimated that dysphagia (difficulty swallowing) affects 8% of all adults with ID and that 15% require some form of mealtime support. People with ID (whether they require mealtime support or not) also experience a greater burden of ill health and die younger than their peers in the general population with no ID. Methods Using an exploratory, population-based cohort study design, we set out to examine health-related outcomes in adults with ID who receive mealtime support for any eating, drinking or swallowing problem, by establishing the annual incidence of healthcare use, EDS-related ill health, and all-cause mortality. This study was conducted in two counties in the East of England. Results In 2009, 142 adults with mild to profound ID and a need for any type of mealtime support were recruited for a baseline survey. At follow-up 1 year later, 127 individuals were alive, eight had died and seven could not be contacted. Almost all participants had one or more consultations with a general practitioner (GP) each year (85–95%) and, in the first year, 20% reportedly had one or more emergency hospitalizations. Although their annual number of GP visits was broadly comparable with that of the general population, one-fifth of this population's primary healthcare use was directly attributable to EDS-related ill health. Respiratory infections were the most common cause of morbidity, and the immediate cause of all eight deaths, while concerns about nutrition and dehydration were surprisingly minor. Our participants had a high annual incidence of death (5%) and, with a standardized mortality ratio of 267, their observed mortality was more than twice that expected in the general population of adults with ID (not selected because of mealtime support for EDS problems). Conclusions All Annual Health Checks now offered to adults with ID should include questions about respiratory infections and EDS functioning, in order to focus attention on EDS problems in this population. This has the potential to reduce life-threatening illness.

Autobiographical and clinical accounts, as well as a limited neuropsychological research literature, suggest that, in some situations, men and women with autism spectrum conditions (ASCs) may have difficulty making decisions. Little is known, however, about how people with ASCs experience decision-making or how they might best be supported to make decisions for themselves. In this study, we compared the decision-making experiences of adults with and without ASCs (n=38 and n=40, respectively) using a novel questionnaire and the General Decision Making Style inventory (GDMS, Scott & Bruce, 1995). The participants with ASCs reported experiencing several problems in decision-making more frequently than the comparison group, and were more likely to report avoidance of decision-making, as measured using the GDMS. The findings highlight areas of potential future research and inform suggestions for supporting adults with ASCs during decision-making

Voting is a political right, not a matter of competence to make decisions In England, 700 000 people have dementia and 1.2 million have a learning disability.1 2 Many of these will have wanted to vote in this year’s UK general election and had the mental capacity to do so, but a substantial proportion may not have had the opportunity. This is important because the number of people living in democracies worldwide is increasing. If people are denied the opportunity to vote (because they are not encouraged to register or because voting is not facilitated) their rights as citizens are undermined. Furthermore, because the ways to vote (and consequently to vote fraudulently) are increasing, if a vote is cast for someone who lacks capacity, democracy may be undermined. Capacity increasingly causes difficulties for both paid and family carers, as Livingston and colleagues highlight in the linked study (doi:10.1136/bmj.c4184),3 so it seems inevitable that doctors will be asked to assess capacity to vote. The first concern is a lack of clear advice. In the United Kingdom, …

Purpose Despite the common occurrence of intellectual disability (ID) in people with epilepsy, most studies of the cost of epilepsy have focussed primarily or exclusively on people without ID. This paper estimates the costs of supporting people with epilepsy and ID. Methods Prospective resource use and outcome data were collected on 91 participants from the east of England for seven months. Multivariate analysis was used to investigate the relationship between costs and patient and healthcare provider characteristics. Results Mean health care costs relating to epilepsy or ID were £2800 (3500 Euros, 5200 USD) p.a. Modelling suggests costs are lower for patients with more severe ID ( p =0.014); and higher for patients managed by a consultant neurologist ( p =0.037). Discussion Our findings support limited evidence from the literature of increased epilepsy costs in people with ID. Patterns of expenditure suggest clinical variation in the treatment of epilepsy according to the severity of ID, particularly in the absence of management by a consultant neurologist.