Sheila Hollins

Low level alcohol consumption and the fetus

Abstinence from alcohol is the only safe message in pregnancy R ecently the media in the United Kingdom highlighted the messages presented by one of us (RASM) and researchers from other industrialised countries, that the only safe communication about alcohol consumption in pregnancy is that of abstinence. Unfortunately the scientific basis for this recommendation was not clarified in the media. We provide here examples of the evidence that has led the United States, Canada, Australia, and other countries to adopt the abstinence message. Fetal alcohol syndrome was first reported in the international literature by Smith and Jones in 1973.1 Before that, Lemoine published a series of 127 cases in France, highlighting the phenotypic presentation of people exposed to alcohol while pregnant.2 The full syndrome is characterised by a combination of short stature, neurocognitive deficits, and a specific triad of facial dysmorphology (short palpebral fissures, flat philtrum, and thin upper lip vermilion). Fetal alcohol spectrum disorder is an overarching term encompassing the behavioural diagnoses occur …

Disclosure and understanding of cancer diagnosis and prognosis for people with intellectual disabilities: Findings from an ethnographic study

PURPOSE Growing numbers of people with intellectual disabilities are diagnosed with a life-limiting illness such as cancer. Little is known about disclosure of diagnosis and prognosis to this group. The study aim was to explore how much people with intellectual disabilities who have cancer understand about their diagnosis and prognosis, and to explore how much they are told about their cancer. METHOD 13 people with intellectual disabilities and cancer took part in a 3-year ethnographic study. Data collection consisted mostly of participant observation. Participants were visited regularly for a median of 7 months. RESULTS Eleven participants were told that they had cancer, but most were not helped to understand the implications of this diagnosis or their prognosis. Decisions around disclosure, as well as the task of truth-telling, rested mostly with relatives and paid carers. Those with severe/profound intellectual disabilities were most likely to be protected from the truth. Understanding was affected by cognitive ability, life experience and truth-telling. Lack of understanding affected the ability to take decisions about treatment and care. CONCLUSIONS Existing models for breaking bad news are inadequate for people with intellectual disabilities. The findings suggest that more open communication is needed, but further studies are needed to establish best practice in this area.

Report of the WPA Task Force on Brain Drain

The brain drain of health professionals is an issue of continuing interest and debate. The WPA set up a Task Force to examine the phenomenon as it relates specifically to mental health professionals. This report provides a description of the work of the Task Force and its recommendations in regard to how the WPA might act to help address the issue.

The barriers to and enablers of providing reasonably adjusted health services to people with intellectual disabilities in acute hospitals: evidence from a mixed-methods study

Objective To identify the factors that promote and compromise the implementation of reasonably adjusted healthcare services for patients with intellectual disabilities in acute National Health Service (NHS) hospitals. Design A mixed-methods study involving interviews, questionnaires and participant observation (July 2011–March 2013). Setting Six acute NHS hospital trusts in England. Methods Reasonable adjustments for people with intellectual disabilities were identified through the literature. Data were collected on implementation and staff understanding of these adjustments. Results Data collected included staff questionnaires (n=990), staff interviews (n=68), interviews with adults with intellectual disabilities (n=33), questionnaires (n=88) and interviews (n=37) with carers of patients with intellectual disabilities, and expert panel discussions (n=42). Hospital strategies that supported implementation of reasonable adjustments did not reliably translate into consistent provision of such adjustments. Good practice often depended on the knowledge, understanding and flexibility of individual staff and teams, leading to the delivery of reasonable adjustments being haphazard throughout the organisation. Major barriers included: lack of effective systems for identifying and flagging patients with intellectual disabilities, lack of staff understanding of the reasonable adjustments that may be needed, lack of clear lines of responsibility and accountability for implementing reasonable adjustments, and lack of allocation of additional funding and resources. Key enablers were the Intellectual Disability Liaison Nurse and the ward manager. Conclusions The evidence suggests that ward culture, staff attitudes and staff knowledge are crucial in ensuring that hospital services are accessible to vulnerable patients. The authors suggest that flagging the need for specific reasonable adjustments, rather than the vulnerable condition itself, may address some of the barriers. Further research is recommended that describes and quantifies the most frequently needed reasonable adjustments within the hospital pathways of vulnerable patient groups, and the most effective organisational infrastructure required to guarantee their use, together with resource implications.

The impact of raising a child with FASD upon carers: findings from a mixed methodology study in the UK

Research suggests that caring for a child with Fetal Alcohol Spectrum Disorders (FASD) creates unique challenges for carers. To investigate this, three focus groups and education sessions, attended by 66 people, were held in the UK. Knowledge about FASD and its impact on families was evaluated using the focus groups, the Parental Stress Index and knowledge questionnaire. Eight broad themes were identified from thematic analysis of the focus groups. The findings suggest more support is needed for carers of children with FASD, especially as carers grow older. The implication for current practice should be further evaluated in this group.

How (and why) to employ simulated patients with intellectual disabilities

e asked examiners,medical students and theactors themselves forfeedback on a new programmethat employs adults withintellectual disabilities (ID) inteaching and objective structuredclinical examinations (OSCEs).Who do you think made thefollowing comments, and whowere they talking about?• I feel sorry for them• I really want to help them• I’ve learned that they’re justordinary people(Answers at end of article**)

How mental handicap is taught in U.K. medical schools.

A questionnaire survey was conducted in all U.K. medical schools to explore the extent of undergraduate medical teaching in the field of mental handicap. Comparisons are drawn with previous surveys. The most interesting and well thought out courses emanated from medical schools where academic appointments in the psychiatry of mental handicap have been made. The author concludes that clear aims and objectives need to be defined by all schools.

Indicators of choking risk in adults with learning disabilities: A questionnaire survey and interview study

Purpose. Feeding and swallowing impairments are key predictors of increased morbidity and mortality in adults with learning disabilities. This postal survey and interview study sought to identify risk factors in adults with learning disabilities who have histories of choking. Method. A total of 2000 questionnaires were sent to carers of all adults with learning disabilities registered as service users by three local health authorities. (A ‘service user’ may be using any specialist learning disability health or social care facility with day, residential or therapeutic services). Of the 674 service users for whom surveys were returned, 47 were living in hospital, 396 were living in residential or group homes and 208 were living with relatives, or in their own homes. Eighteen subjects who had reported serious or repeated episodes of choking were interviewed in depth in their residences or workplaces. Responses were subjected to frequency analyses. Personal characteristics were analysed. Choking patterns were differentiated by food texture. Results. A total of 34% of questionnaires on 674 service users were returned; 42% of respondents reported one or more choking episodes. There was a significantly greater occurrence of choking among people with more severe learning disability, with Down syndrome, people who had an incomplete dentition or were taking a greater number of psychotropic drugs. Antisocial eating habits learnt in institutional settings presented an additional choking hazard for some individuals. Conclusion. Choking is a serious hazard for many adults with learning disabilities. This study establishes many of the characteristics associated with swallowing problems in this population. Clinicians and carers should benefit from awareness of these predictors, leading to better management of eating behaviours and habits. A choking and swallowing risk assessment should be included in routine health assessments of adults with learning disability, paying especial attention to the condition of a persons teeth; possible side effects from prescribed medication, and abnormal eating behaviour.

Bereavement interventions for people with learning disabilities

Existing research’ shows that people with learning disabilities experience significantly more emotional difliculties following bereavement than the general population. In response to this, a research study was set up aimed at finding an intervention that could be shown to be beneficial to bereaved people with learning disabilities.This paper reports on the findings, which have important implications for existing bereavement support services.

The challenges in monitoring and preventing patient safety incidents for people with intellectual disabilities in NHS acute hospitals: evidence from a mixed-methods study.

BackgroundThere has been evidence in recent years that people with intellectual disabilities in acute hospitals are at risk of preventable deterioration due to failures of the healthcare services to implement the reasonable adjustments they need. The aim of this paper is to explore the challenges in monitoring and preventing patient safety incidents involving people with intellectual disabilities, to describe patient safety issues faced by patients with intellectual disabilities in NHS acute hospitals, and investigate underlying contributory factors.MethodsThis was a 21-month mixed-method study involving interviews, questionnaires, observation and monitoring of incident reports to assess the implementation of recommendations designed to improve care provided for patients with intellectual disabilities and explore the factors that compromise or promote patient safety. Six acute NHS Trusts in England took part. Data collection included: questionnaires to clinical hospital staff (n = 990); questionnaires to carers (n = 88); interviews with: hospital staff including senior managers, nurses and doctors (n = 68) and carers (n = 37); observation of in-patients with intellectual disabilities (n = 8); monitoring of incident reports (n = 272) and complaints involving people with intellectual disabilities.ResultsStaff did not always readily identify patient safety issues or report them. Incident reports focused mostly around events causing immediate or potential physical harm, such as falls. Hospitals lacked effective systems for identifying patients with intellectual disabilities within their service, making monitoring safety incidents for this group difficult.The safety issues described by the participants were mostly related to delays and omissions of care, in particular: inadequate provision of basic nursing care, misdiagnosis, delayed investigations and treatment, and non-treatment decisions and Do Not Attempt Cardiopulmonary Resuscitation (DNACPR) orders.ConclusionsThe events leading to avoidable harm for patients with intellectual disabilities are not always recognised as safety incidents, and may be difficult to attribute as causal to the harm suffered. Acts of omission (failure to give care) are more difficult to recognise, capture and monitor than acts of commission (giving the wrong care). In order to improve patient safety for this group, the reasonable adjustments needed by individual patients should be identified, documented and monitored.