Marcus Redley

Decision-Making Difficulties Experienced by Adults With Autism Spectrum Conditions

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

Understanding the social exclusion and stalled welfare of citizens with learning disabilities

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.

The extent and nature of need for mealtime support among adults with intellectual disabilities

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.

Hospital Clinicians’ Attitudes Towards a Statutory Advocacy Service for Patients Lacking Mental Capacity: Implications for Implementation:

Objectives To examine attitudes to the Mental Capacity Acts 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.

Participation in the 2005 general election by adults with intellectual disabilities

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.

The incidence of healthcare use, ill health and mortality in adults with intellectual disabilities and mealtime support needs

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 populations 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.

The Involvement of Parents in Healthcare Decisions Where Adult Children Are at Risk of Lacking Decision-Making Capacity: A Qualitative Study of Treatment Decisions in Epilepsy.

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 daughters 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.

Investigating the widely held belief that men and women with learning disabilities receive poor quality healthcare when admitted to hospital: a single-site study of 30-day readmission rates

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.

Factors influencing the costs of epilepsy in adults with an intellectual disability

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.

Healthcare for men and women with learning disabilities: understanding inequalities in access

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.