scholarly journals Unmasked: an insight into three patients’ rare disease experiences during the COVID-19 pandemic

2021 ◽  
Vol 16 (1) ◽  
Author(s):  
Catriona Chaplin
Keyword(s):  
Rare Disease ◽  
Patient Group ◽  
Support Group ◽  
Group I ◽  
Patient Groups ◽  
The Uk ◽  
Insight Into ◽  
Disease Community

AbstractThis article describes my reflections of speaking with three patients and their families living with mastocytosis, who I was introduced to through the UK Mastocytosis Support Group. I discuss the various ways in which the condition affects their day-to-day lives and how this has changed during the Covid-19 pandemic. I have tried to give an insight into the particular difficulties that this patient group faces, both during and before the pandemic, whilst also considering how these challenges may resonate more widely with other patient groups in the rare disease community. Pseudonyms are used throughout to protect patient anonymity.

scholarly journals Definitely Maybe: New Governance of Uncertainty and Risk in Patient Group Involvement with UK Guidance on Testing for Lyme Disease

2021 ◽  
pp. 097172182096024
Author(s):  
Alex Faulkner ◽  
Kate Bloor ◽  
Vahsti Hale
Keyword(s):  
Lyme Disease ◽  
Patient Group ◽  
New Governance ◽  
Difficult Patient ◽  
Consultation Process ◽  
Diagnostic Uncertainty ◽  
Policy Actors ◽  
Patient Groups ◽  
Evidence Review ◽  
The Uk

States that claim responsibility for citizens’ healthcare try to deal with knowledge uncertainties while preserving a duty of care. Production of clinical guidelines in disputed medical conditions or where uncertainty is high, is difficult. Patient groups may advocate non-credentialed evidence, contribute to debates and form alliances with established policy actors. In this context, Lyme disease, especially highly contested ‘chronic’ Lyme disease is a good case with which to examine how official governance institutions are managing diagnostic uncertainty and evidence for tests. The healthcare state has been provoked to develop extensive policy for Lyme disease. In the UK, national Health Technology Assessment agency, NICE, began a consultation process in 2016. NICE and other policy actors are moving towards more participatory modes of decision-making. The article analyses NICE’s recently published guidelines and consultation documents; patient groups’ contributions; observations of consultations and of evidence review processes; and recent Department of Health systematic reviews, including patient group participation. We draw on concepts of participatory governance, patient group activism and guideline involvement. We find an increased level of participation by patient groups in recent policy and evidence review processes, and hence legitimation of them as ‘stakeholders’, alongside a strengthened state position on pre-existing diagnostic and testing standards.

scholarly journals NICE and Society: Health Technology Appraisal and the Cultivation of Social Relations

2019 ◽  
Vol 25 (2) ◽  
pp. 165-183
Author(s):  
Matthias Benzer
Keyword(s):  
Social Relations ◽  
Health Technology ◽  
General Terms ◽  
Sociological Inquiry ◽  
The Social ◽  
Patient Groups ◽  
The Uk ◽  
Health Technology Appraisal ◽  
Insight Into

This article presents a sociological inquiry into the politics of the UK National Institute for Health and Care Excellence’s (NICE) approach to health technology appraisals. It is based on analyses of documents published by NICE and of a 2005–2008 interdisciplinary debate about the ethics of its activities. Simultaneously, the article brings further perspectives to this debate by clarifying that NICE, through the comparisons central to its approach, arranges a competition in producing health between different treatments applied to their respective particular patient groups. In fostering competition for differentiation, NICE’s approach resembles objectives for shaping social relationships often attributed to neoliberal politics. Yet closer scrutiny reveals that NICE’s creation of positions for, and relations between, patients is simultaneously more problematic. A comparison between NICE’s work and long-standing sociological conceptions of the social relationship offers insight into the quality of the social relations NICE’s approach supports in more general terms.

Specialist infantry and defence engagement

2020 ◽  
pp. bmjmilitary-2020-001455 ◽  
Author(s):  
Jonathan Blair Thomas Herron ◽  
K M Heil ◽  
D Reid
Keyword(s):  
Armed Forces ◽  
Short Term ◽  
The Future ◽  
Uk Government ◽  
The Uk ◽  
Insight Into

In 2015, the UK government published the National Strategic Defence and Security Review (SDSR) 2015, which laid out their vision for the future roles and structure of the UK Armed Forces. SDSR 2015 envisaged making broader use of the Armed Forces to support missions other than warfighting. One element of this would be to increase the scale and scope of defence engagement (DE) activities that the UK conducts overseas. DE activities traditionally involve the use of personnel and assets to help prevent conflict, build stability and gain influence with partner nations as part of a short-term training teams. This paper aimed to give an overview of the Specialist Infantry Group and its role in UK DE. It will explore the reasons why the SDSR 2015 recommended their formation as well as an insight into future tasks.

The RUMA Alliance targets: an overview

Livestock ◽  
2021 ◽  
Vol 26 (4) ◽  
pp. 176-179
Author(s):  
Chris Lloyd
Keyword(s):  
Task Force ◽  
Animal Health ◽  
Antibiotic Use ◽  
Codes Of Practice ◽  
The Government ◽  
The Uk ◽  
Ongoing Support ◽  
The Impact ◽  
Insight Into ◽  
Roll Out

The Responsible Use of Medicines in Agriculture Alliance (RUMA) was established to promote the highest standards of food safety, animal health and animal welfare in the British livestock industry. It has a current focus to deliver on the Government objective of identifying sector-specific targets for the reduction, refinement or replacement of antibiotics in animal agriculture. The creation and roll out of sector specific targets in 2017 through the RUMA Targets Task Force, has helped focus activity across the UK livestock sectors to achieve a 50% reduction in antibiotic use since 2014. This has been realised principally through voluntary multi-sector collaboration, cross sector initiatives, codes of practice, industry body support and farm assurance schemes. This article provides an overview of RUMA's work to date providing insight into the methods used to create the targets, why they are so important, the impact they are having and how ongoing support and robust data are vital components in achieving the latest set of targets.

scholarly journals A Case Study of a Negotiated Tender within a Small-to-Medium Construction Contractor: Modelling Project Cost Variance

Buildings ◽  
2021 ◽  
Vol 11 (6) ◽  
pp. 260
Author(s):  
James Ellis ◽  
David John Edwards ◽  
Wellington Didibhuku Thwala ◽  
Obuks Ejohwomu ◽  
Ernest Effah Ameyaw ◽  
...  
Keyword(s):  
Construction Industry ◽  
Study Data ◽  
Review Literature ◽  
Third Party ◽  
Open Book ◽  
Competitive Tendering ◽  
Construction Contractor ◽  
The Uk ◽  
Insight Into

This research explores the failure of competitively tendered projects in the UK construction industry to procure the most suited contractor(s) to conduct the works. Such work may have equal relevance for other developed nations globally. This research seeks to teach clients and their representatives that “lowest price” does not mean “best value”, by presenting a case study of a successfully negotiated tender undertaken by a small-to-medium enterprise (SME) contractor; SME studies are relatively scant in academic literature. By applying the “lessons learnt” principle, this study seeks to improve future practice through the development of a novel alternative procurement option (i.e., negotiation). A mixed philosophical stance combining interpretivism and pragmatism was used—interpretivism to critically review literature in order to form the basis of inductive research to discuss negotiation as a viable procurement route, and pragmatism to analyse perceptions of tendering and procurement. The methods used follow a three-stage waterfall process including: (1) literature review and pilot study; (2) quantitative analysis of case study data; and (3) qualitative data collection via a focus group. Our research underscores the need to advise clients and their representatives of the importance of understanding the scope of works allowed within a tender submission before discounting it based solely on price. In addition, we highlight the failings of competitive tendering, which results in increased costs and project duration once the works commence on site. These findings provide new contemporary insight into procurement and tendering in the construction industry, with emphasis on SME contractors, existing relationships, and open-book negotiation. This research illustrates the adverse effects of early cost estimates produced without first securing a true understanding of project buildability and programming. Our work concludes with a novel insight into an alternative procurement option that involves early SME contractor involvement in an open-book environment, without the need for a third-party cost control.

Agricultural Multifunctionality and Care Farming: Insight from the UK

2015 ◽  
Vol 4 (1) ◽  
pp. 74-86
Author(s):  
Paul Custance ◽  
Keith Walley ◽  
Gaynor Tate ◽  
Goksel Armagan
Keyword(s):  
Learning Material ◽  
Multifunctional Agriculture ◽  
Economic Support ◽  
International Audience ◽  
The Uk ◽  
Generic Points ◽  
Care Farming ◽  
Compare And Contrast ◽  
Insight Into

The purpose of the article is to provide insight into care farming and the role that it may play in agriltural multifunctionality. The paper outlines three case studies of care farming in the UK to compare and contrast the roles that such organizations may play in multifunctional agriculture. Although the work has the obvious limitation of being based on case-study care farms that are based in the UK, the findings are sufficiently generic to serve as valuable learning material for those interested in the subject and located anywhere in the world. The main finding from this study is that care farming can take many different forms but still contribute to agricultural multifunctionality. The study also confirms the important roles that economic support and favourable legislation play in successful care farming. The paper concludes that care farming is a legitimate form of agricultural multifunctionality but reminds those interested in setting up or promoting care farms of the need for a supportive economic and legislative environment. The paper provides contemporary insight into the concept of care farming as a form of agricultural multifunctionality. A number of generic points are made that should be of value to an international audience of academics researching in this area as well as students studying care farming and agricultural multifunctionality, farmers considering diversifying into care farming and politicians working to create a political and economic environment that may support care farms.

scholarly journals Social Polarisation at the Local Level: A Four-Town Comparative Study on the Challenges of Politicising Inequality in Britain

Sociology ◽  
2020 ◽  
pp. 003803852097559 ◽  
Author(s):  
Insa Koch ◽  
Mark Fransham ◽  
Sarah Cant ◽  
Jill Ebrey ◽  
Luna Glucksberg ◽  
...  
Keyword(s):  
Comparative Study ◽  
Local Level ◽  
Social Groups ◽  
Community Analysis ◽  
Common Features ◽  
Social Polarisation ◽  
The Uk ◽  
Missing Middle ◽  
Insight Into

This article examines how intensifying inequality in the UK plays out at a local level, in order to bring out the varied ways polarisation takes place ‘on the ground’. It brings a community analysis buttressed by quantitative framing to the study of economic, spatial and relational polarisation in four towns in the UK. We distinguish differing dynamics of ‘elite-based’ polarisation (in Oxford and Tunbridge Wells) and ‘poverty-based’ polarisation (in Margate and Oldham). Yet there are also common features. Across the towns, marginalised communities express a sense of local belonging. But tensions between social groups also remain strong and all towns are marked by a weak or ‘squeezed middle’. We argue that the weakness of intermediary institutions, including but not limited to the ‘missing middle’, and capable of bridging gaps between various social groups, provides a major insight into both the obstacles to, and potential solutions for, re-politicising inequality today.

scholarly journals Long COVID and the role of physical activity: a qualitative study

BMJ Open ◽  
2021 ◽  
Vol 11 (3) ◽  
pp. e047632
Author(s):  
Helen Humphreys ◽  
Laura Kilby ◽  
Nik Kudiersky ◽  
Robert Copeland
Keyword(s):  
Physical Activity ◽  
Qualitative Study ◽  
Lived Experience ◽  
Well Being ◽  
Telephone Interviews ◽  
Semistructured Interviews ◽  
The Usa ◽  
The Uk ◽  
Insight Into

ObjectivesTo explore the lived experience of long COVID with particular focus on the role of physical activity.DesignQualitative study using semistructured interviews.Participants18 people living with long COVID (9 men, 9 women; aged between 18–74 years; 10 white British, 3 white Other, 3 Asian, 1 black, 1 mixed ethnicity) recruited via a UK-based research interest database for people with long COVID.SettingTelephone interviews with 17 participants living in the UK and 1 participant living in the USA.ResultsFour themes were generated. Theme 1 describes how participants struggled with drastically reduced physical function, compounded by the cognitive and psychological effects of long COVID. Theme 2 highlights challenges associated with finding and interpreting advice about physical activity that was appropriately tailored. Theme 3 describes individual approaches to managing symptoms including fatigue and ‘brain fog’ while trying to resume and maintain activities of daily living and other forms of exercise. Theme 4 illustrates the battle with self-concept to accept reduced function (even temporarily) and the fear of permanent reduction in physical and cognitive ability.ConclusionsThis study provides insight into the challenges of managing physical activity alongside the extended symptoms associated with long COVID. Findings highlight the need for greater clarity and tailoring of physical activity-related advice for people with long COVID and improved support to resume activities important to individual well-being.

scholarly journals Student engagement with sustainability: understanding the value–action gap

2014 ◽  
Vol 15 (4) ◽  
pp. 404-417 ◽  
Author(s):  
Gareth Chaplin ◽  
Paul Wyton
Keyword(s):  
Design Methodology ◽  
Strong Association ◽  
Structured Interviews ◽  
Online Questionnaire ◽  
Sustainable Living ◽  
Content Type ◽  
Lack Of Information ◽  
Significant Barrier ◽  
The Uk ◽  
Insight Into

Purpose – The purpose of this paper is to present the findings of research that aimed to determine what university students living in Unite accommodation in the UK understand about the concept of sustainable living. It considers what barriers they perceive to be standing in the way of following sustainable living practices. In particular, the research aimed to explore any value–action gap for the student population with a view to informing future actions to help close any gap. Design/methodology/approach – The study was completed through an online questionnaire survey of students living in halls of residence operated by provider The Unite Group Plc. The survey informed semi-structured interviews and focus groups that explored the issues raised in greater detail. Findings – It was found that students living in Unite properties believed sustainable living to be important, yet levels of understanding were very low and there appeared to be a wide value–action gap. Reasons for this are varied; however, an unexpected theme emerged around the association of effort and importance. There was a very strong association between sustainable living and recycling, which, therefore, saw the lack of adequate recycling facilities as a significant barrier to sustainable living. There were also issues around a lack of information, cost and respondents’ flatmates as further barriers. However, the most significant barrier was the displacement of responsibility for sustainable living to other people or organisations. Originality/value – Gaining an insight into the complexity of attitude and behaviour of students with the sustainability agenda will enable understanding that can be applied to activities that promote sustainability.

scholarly journals Charting the Rough Journey to ‘Home’: The Contribution of Qualitative Longitudinal Research to Understandings of Homelessness in Austerity

2021 ◽  
pp. 1-17
Author(s):  
Emma Davidson ◽  
Briege Nugent ◽  
Sarah Johnsen
Keyword(s):  
Longitudinal Research ◽  
Support Service ◽  
Added Value ◽  
Small Scale ◽  
Deep Insight ◽  
Policy Makers ◽  
Analytical Potential ◽  
Longitudinal Approach ◽  
The Uk ◽  
Insight Into

This article reflects on the contribution of qualitative longitudinal research (QLR) to understandings of homeless peoples’ experiences of support service interventions in an era of austerity in the UK. It brings into ‘analytic conversation’ data from qualitative longitudinal evaluations of homeless support projects operated by voluntary sector organisations in Scotland. With fieldwork spanning 2014-2019, the analysis expands the analytical potential of pooling small-scale studies through an interrogation of individuals’ ‘journeys’ through homelessness services and their rough path to ‘home’. By reflecting on our substantive findings, the article explores the added value and challenges of a longitudinal approach. It concludes that while QLR can deliver deep insight into lives lived by vulnerable populations and potentially reduce the distance between policy makers and those affected, its benefits must be balanced against pragmatism and the ethical responsibilities associated with the method.

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