Living with MND: An Evaluation of Care Pathways Available to Adults with, and the Families or Carers of Adults with Motor Neurone Disease in Scotland

Main Findings Motor Neurone Disease (MND) is a progressive condition that damages motor neurones, the cells that control voluntary muscle activity, in both the spinal cord and the brain. It can cause difficulty in walking and movement, talking, swallowing and breathing and many muscles in the body can become affected. To find out what it is like to live with MND from the perspective of those with the condition we carried out a longitudinal study in which we interviewed 40 people with MND and their partners a number of times over a two year period. We found that: Control, or more particularly the lack of it was the overarching theme that occurred throughout the interviews. People wanted to be consulted, informed and involved in decisions about their health and their social care and where this happened people were more likely to report satisfaction with the service. The diagnosis of MND is a long and protracted process, one that was for many a very distressing experience. 45% of those we spoke to took over 12 months for a diagnosis, 19% over 18 months. Participants had difficulty getting professionals to take their symptoms seriously and once they entered the neurology system many people experienced delays and often the diagnosis was not confirmed by a neurologist. Physical access to hospitals was in some cases difficult. Car parking and the location of the clinic often made it hard for people to get to a hospital appointment. Health professionals had an important role. Good professionals were those who took time to create a sense of teamwork with the person with MND and their family. This was less likely to happen with hospital consultants and where this did not people felt insecure and not listened to. There was also some evidence of poor communication between professionals and medical notes were often not shared between different professionals. Where people accessed general wards they were rarely treated well. Informal carers provided much of the social care and support for those with MND, with spouses meeting most of the need. Whilst many people were happy with this arrangement meeting the need placed a great deal of strain on the families. Many people did not want to rely on care supplied by outside agencies as they did not trust the quality or the reliability of the care and neither did they want their home overrun with people. Housing adaptations and the provision of aids to daily living were for many a great cause of stress and strain and many people felt that they were not involved in the decision making process, felt out of control and unable to influence the situation. The rapidly progressive nature of MND can exacerbate this problem. Social Care and support provided by local authorities was very heavily criticised. There were inconsistencies between services, people felt excluded from decisions made about their care and their care needs and people did not have access to the necessary information to make an informed choice about which services to access. Specialist Care Nurses (SCN) played a vital role in the care and support of those with MND. Not only do they provide help and support directly they also help to act as a champion for the family and coordinate services and service provision. This service is however under great strain and there are a significant number of people for whom this service is not working because the service was too stretched and the resources were not available to allow the SCN to meet their needs

A critical assessment of marine aquarist biodiversity data and commercial aquaculture:identifying gaps in culture initiatives to inform local fisheries managers

It is widely accepted that if well managed, the marine aquarium trade could provide socio-economic stability to local communities while incentivising the maintenance of coral reefs. However, the trade has also been implicated as having potentially widespread environmental impacts that has in part driven developments in aquaculture to relieve wild collection pressures. This study investigates the biodiversity in hobbyist aquaria (using an online survey) and those species currently available from an aquaculture source (commercial data and hobbyist initiatives) in the context of a traffic light system to highlight gaps in aquaculture effort and identify groups that require fisheries assessments. Two hundred and sixty nine species including clown fish, damsels, dotty backs, angelfish, gobies, sea horses and blennies, have reported breeding successes by hobbyists, a pattern mirrored by the European and US commercial organisations. However, there is a mismatch (high demand and low/non-existent aquaculture) for a number of groups including tangs, starfish, anemones and hermit crabs, which we recommend are priority candidates for local stock assessments. Hobbyist perception towards the concept of a sustainable aquarium trade is also explored with results demonstrating that only 40% of respondents were in agreement with industry and scientists who believe the trade could be an exemplar of a sustainable use of coral reefs. We believe that a more transparent evidence base, including the publication of the species collected and cultured, will go some way to align the concept of a sustainable trade across industry stakeholders and better inform the hobbyist when purchasing their aquaria stock. We conclude by proposing that a certification scheme established with government support is the most effective way to move towards a self-regulating industry. It would prevent industry "greenwashing" from multiple certification schemes, alleviate conservation concerns, and, ultimately, support aquaculture initiatives alongside well managed ornamental fisheries

An In-Depth Examination of the Implementation of the Disability Equality Duty in England: Report for the Office for Disability Issues

This seven-month study examined the implementation of the Disability Equality Duty (DED) in England. The DED, introduced through the Disability Discrimination Act 2005, applies to public authorities in England, Wales and Scotland. The DED comprises a general duty and specific duties. The general duty requires public authorities to carry out their functions with due regard to the need to promote equality between disabled and non-disabled people. The specific duties require public authorities to publish a Disability Equality Scheme (DES) setting out how they intend to fulfil their general duty and specific duties. In addition, certain Secretaries of State must publish an overarching report for their policy sectors every three years. A Code of Practice1 to assist authorities with implementing the Duty was published by the then Disability Rights Commission

Multi-Objective Control-Structures Optimization Via Homotopy Methods

A recently developed active set algorithm for tracking parametrized optima is adapted to multi-objective optimization. The algorithm traces a path of Kuhn-Tucker points using homotopy curve tracking techniques, and is based on identifying and maintaining the set of active constraints. Second order necessary optimality conditions are used to determine nonoptimal stationary points on the path. In the bi-objective optimization case the algoritm is used to trace the curve efficient solutions (Pareto optima). As an example, the algorithm is applied to the simultaneous minimization of the weight and control force of a ten-bar truss with two collocated sensors and actuators, with some interesting results

User Preferences for Content, Features, and Style for an App to Reduce Harmful Drinking in Young Adults:Analysis of User Feedback in App Stores and Focus Group Interviews

BACKGROUND: Electronic screening and brief intervention (eSBI) is effective in reducing weekly alcohol consumption when delivered by a computer. Mobile phone apps demonstrate promise in delivering eSBI; however, few have been designed with an evidence-based and user-informed approach.  OBJECTIVE: This study aims to explore from a user perspective, preferences for content, appearance, and operational features to inform the design of a mobile phone app for reducing quantity and frequency of drinking in young adults engaged in harmful drinking (18-30 year olds).  METHODS: Phase 1 included a review of user reviews of available mobile phone apps that support a reduction in alcohol consumption. Apps were identified on iTunes and Google Play and were categorized into alcohol reduction support, entertainment, blood alcohol content measurement (BAC), or other. eSBI apps with ≥18 user reviews were subject to a content analysis, which coded praise, criticism, and recommendations for app content, functionality, and esthetics. Phase 2 included four focus groups with young adults drinking at harmful levels and residing in South London to explore their views on existing eSBI apps and preferences for future content, functionality, and appearance. Detailed thematic analysis of the data was undertaken.  RESULTS: In Phase 1, of the 1584 apps extracted, 201 were categorized as alcohol reduction, 154 as BAC calculators, 509 as entertainment, and 720 as other. We classified 32 apps as eSBI apps. Four apps had ≥18 user reviews: Change for Life Drinks Tracker, Drinksmeter, Drinkaware, and Alcohol Units Calculator. The highest proportion of content praises were for information and feedback provided in the apps (12/27, 44%), followed by praise for the monitoring features (5/27, 19%). Many (8/12, 67%) criticisms were for the drinking diary; all of these were related to difficulty entering drinks. Over half (18/32, 56%) of functionality criticisms were descriptions of software bugs, and over half of those (10/18, 56%) were for app crashing or freezing. Drinksmeter and Alcohol Units Calculator were the most highly praised apps overall (23/57 and 22/57; 39% of praise overall). In Phase 2, two main themes were identified. The meaningfulness theme reflected how young adults thought apps needed to be tailored to the interests and values of their age group, particularly emphasizing content and feedback around broader health and well-being factors such as exercise, diet, and image. The community theme suggested that young adults want to be able to engage with other app users, both in groups of friends and with online users for motivation and support.  CONCLUSIONS: Targeted and relevant information and feedback, in addition to easy-to-use monitoring tools, were found to be important features of a mobile phone app to support a reduction in drinking. Future app development should consider tailoring all app aspects to the needs of young adults, considering broader well-being monitoring tools and online community functions

A systematic review of the effects of psychiatric medications on social cognition

INTRODUCTION: Social cognition is an important area of mental functioning relevant to psychiatric disorders and social functioning, that may be affected by psychiatric drug treatments. The aim of this review was to investigate the effects of medications with sedative properties, on social cognition. METHOD: This systematic review included experimental and neuroimaging studies investigating drug effects on social cognition. Data quality was assessed using a modified Downs and Black checklist (Trac et al. CMAJ 188: E120-E129, 2016). The review used narrative synthesis to analyse the data. RESULTS: 40 papers were identified for inclusion, 11 papers investigating benzodiazepine effects, and 29 investigating antipsychotic effects, on social cognition. Narrative synthesis showed that diazepam impairs healthy volunteer’s emotion recognition, with supporting neuroimaging studies showing benzodiazepines attenuate amygdala activity. Studies of antipsychotic effects on social cognition gave variable results. However, many of these studies were in patients already taking medication, and potential practice effects were identified due to short-term follow-ups. CONCLUSION: Healthy volunteer studies suggest that diazepam reduces emotional processing ability. The effects of benzodiazepines on other aspects of social cognition, as well as the effects of antipsychotics, remain unclear. Interpretations of the papers in this review were limited by variability in measures, small sample sizes, and lack of randomisation. More robust studies are necessary to evaluate the impact of these medications on social cognition. SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1186/s12888-021-03545-z

Postfledging Survival, Movements, and Dispersal of Ring Ouzels (Turdus torquatus)

We thank Invercauld Estate for cooperation with access to Glen Clunie. S. Redpath, J. Wilson, and S. Roos provided valuable comments on the manuscript. This study was funded by the Royal Society for the Protection of Birds, Scottish Natural Heritage, and the Cairngorms National Park Authority. J.L.L. was supported by the Natural Environment Research Council.Peer reviewedPublisher PD

Understanding patient and family utilisation of community-based palliative care services out-of-hours: Additional analysis of systematic review evidence using narrative synthesis

BackgroundCommunity-based out-of-hours services are an integral component of end-of-life care. However, there is little understanding of how patients and families utilise these services. This additional analysis of a systematic review aims to understand and identify patterns of out-of-hours service use and produce recommendations for future service design.MethodData on service use was extracted and secondary analysis undertaken, from a systematic review of models of community out-of-hours services. Narrative synthesis was completed, addressing four specific aspects of service use: 1.Times when patients/families/healthcare professionals need to contact out-of-hours services; 2. Who contacts out-of-hours services; 3. Whether a telephone call, centre visit or home visit is provided; 4. Who responds to out-of-hours calls.ResultsCommunity-based out-of-hours palliative care services were most often accessed between 5pm and midnight, especially on weekdays (with reports of 69% of all calls being made out-of-hours). Family members and carers were the most frequent callers to of the services (making between 60% and 80% of all calls). The type of contact (telephone, centre visit or home visit) varied based on what was offered and on patient need. Over half of services were led by a single discipline (nurse).ConclusionsOut-of-hours services are highly used up to midnight, and particularly by patients’ family and carers. Recommendations to commissioners and service providers are to:• Increase provision of out-of-hours services between 5pm and midnight to reflect the increased use at these times.• Ensure that family and carers are provided with clear contact details for out-of-hours support.• Ensure patient records can be easily accessed by health professionals responding to calls, making the triage process easier.• Listen to patients, family and carers in the design of out-of-hours services, including telephone services.• Collect data systematically on out-of-hours-service use and on outcomes for patients who use the service