Close to Home / Made in the UK

The first meeting of the All Party Parliamentary Group on Ethics and Sustainability in Fashion, convened by Baroness Lola Young. The meeting explored the contribution that forward thinking UK fashion and textile businesses make to local economies, communities and the environment. Baroness Lola Young, Dr Frances Corner OBE (Head of the London College of Fashion) and Martin Buttle (Supply Chain Manager at MADE-BY) started the meeting with opening remarks and introductions. Dr Kate Fletcher (Reader at the Centre for Sustainable Fashion) expanded on the Close to Home/Made in the UK theme. Five shirt presentations followed from UK manufacturers/brands involved in fashion, textiles and footwear: Christopher Raeburn, Dashing Tweeds, Tender Denim, Ardalanish Isle of Mull Weavers and John Smedley. Ruth Potts (New Economics Foundation) then talked about sustaining local economies and economic well-being. A discussion followed with questions and commentary from the audience, who represented a wide cross section of the industry including high street retailers, press, fashion designers and international organisations. Through the sharing of experiences, personal journeys, discoveries, traditions, technologies and crafts, many of the joys, pains, challenges and opportunities for UK fashion manufacturing where explored. A momentum to keep building. A feeling of positivity and urgency. A debate to be continued. Actions for now and the future we create. There was also a Local Wisdom project underway, to record and celebrate the clothes we wear and the ways in which we wear them. Participants shared the story of their clothing and had their portraits taken wearing it in the Westminster Great Hall

Newborn screening for spinal muscular atrophy : the views of affected families and adults

Spinal muscular atrophy (SMA) is one of the leading genetic causes of infant death worldwide. However, due to a lack of treatments, SMA has historically fallen short of Wilson-Jungner criteria. While studies have explored the acceptability of expanded newborn screening to the general public, the views of affected families have largely been overlooked. This is in spite of the potential for direct impacts on them and their unique positioning to consider the value of early diagnosis. We have previously reported data on attitudes towards pre-conception and prenatal genetic screening for SMA amongst affected families (adults with SMA (n=82) and family members (n=255)). Here, using qualitative interview (n= 36) and survey data (n= 337), we report the views of this same cohort towards newborn screening. The majority (70%) of participants were in favour, however, all sub-groups (except adults with type II) preferred pre-conception and/or prenatal screening to newborn screening. Key reasons for newborn screening support were: 1) the potential for improved support 2) the possibility of enrolling pre-symptomatic children on clinical trials. Key reasons for non-support were: 1) concerns about impact on the early experiences of the family 2) inability to treat. Importantly, participants did not view the potential for inaccurate typing as a significant obstacle to the launch of a population-wide screening programme. This study underscores the need to include families affected by genetic diseases within consultations on screening. This is particularly important for conditions such as SMA which challenge traditional screening criteria, and for which new therapeutics are emerging

Incorporating patient preferences in the management of multiple long-term conditions: is this a role for clinical practice guidelines?

Background: Clinical practice guidelines provide an evidence-based approach to managing single chronic conditions, but their applicability to multiple conditions has been actively debated. Incorporating patient-preference recommendations and involving consumers in guideline development may enhance their applicability, but further understanding is needed. Objectives: To assess guidelines that include recommendations for comorbid conditions to determine the extent to which they incorporate patient-preference recommendations; use consumer-engagement processes during development, and, if so, whether these processes produce more patient-preference recommendations; and meet standard quality criteria, particularly in relation to stakeholder involvement. Design: A review of Australian guidelines published from 2006 to 2014 that incorporated recommendations for managing comorbid conditions in primary care. Document analysis of guidelines examined the presence of patient-preference recommendations and the consumer-engagement processes used. The Appraisal of Guidelines for Research and Evaluation instrument was used to assess guideline quality. Results: Thirteen guidelines were reviewed. Twelve included at least one core patient-preference recommendation. Ten used consumer-engagement processes, including participation in development groups (seven guidelines) and reviewing drafts (ten guidelines). More extensive consumer engagement was generally linked to greater incorporation of patient-preference recommendations. Overall quality of guidelines was mixed, particularly in relation to stakeholder involvement. Conclusions: Guidelines do incorporate some patient-preference recommendations, but more explicit acknowledgement is required. Consumer-engagement processes used during guideline development have the potential to assist in identifying patient preferences, but further research is needed. Clarification of the consumer role and investment in consumer training may strengthen these processes.Journal of Comorbidity 2015;5(1):122–13

Population screening for spinal muscular atrophy : a mixed methods study of the views of affected families

Autosomal recessive conditions are a significant health burden with few treatments. Population carrier screening has been suggested as a means to tackle them. Little is known about the views of affected families despite the potential for direct impacts on them. Data are presented on attitudes among families affected by Spinal Muscular Atrophy (SMA) toward two population screening programs, pre-conception, and prenatal. Data were gathered through qualitative interviews (n = 36) and a survey (n = 337). Eighty-two survey participants had SMA and 255 were family members. The majority were in favor of screening (75%). Reasons for supporting pre-conception screening support were a belief that it would reduce SMA-related terminations and raise awareness of SMA in the population. For prenatal screening, reasons for support included a belief in the importance of informed decision-making and the need to reduce suffering. Key reasons for non-support of pre-conception screening included concerns about carrier stigmatization and social engineering. For prenatal screening, concerns focused on the collateral loss of high quality of life lives affected by SMA. This study highlights that those affected by SMA are predominantly in favor of screening, although pre-conception screening is most favored. While family members and adults with SMA had largely consistent views, perceptions varied according to the severity (type) of SMA, with those affected by SMA type II the least likely to support screening. These findings suggest that screening for SMA is a complex issue for affected families, underscoring the need to consider and include their views when planning and implementing screening programs. © 2016 Wiley Periodicals, Inc

The role of experiential knowledge within attitudes towards genetic carrier screening : a comparison of people with and without experience of spinal muscular atrophy

Purpose: Autosomal recessive conditions, whilst individually rare, are a significant health burden with limited treatment options. Population carrier screening has been suggested as a means of tackling them. Little is known, however, about the attitudes of the general public towards such carrier screening and still less about the views of people living with candidate genetic diseases. Here, we focus on the role that such experience has on screening attitudes by comparing the views of people with and without prior experience of the monogenetic disorder, Spinal Muscular Atrophy. Methods: An exploratory sequential mixed methods design was adopted. In-depth qualitative interviews were used to develop two surveys. The surveys addressed attitudes towards carrier screening (pre-conceptual and prenatal) for SMA. Participants: 337 participants with SMA experience completed the SMA Screening Survey (UK) and 336 participants with no prior experience of SMA completed the UK GenPop Survey, an amended version of the SMA Screening Survey (UK). Results: The majority of both cohorts were in favour of pre-conception and prenatal carrier screening, however people with experience of type II SMA were least likely to support either. Key differences emerged around perceptions of SMA, with those without SMA experience taking a dimmer than those with

Are care plans suitable for the management of multiple conditions?

Care plans have been part of the primary care landscape in Australia for almost two decades. With an increasing number of patients presenting with multiple chronic conditions, it is timely to consider whether care plans meet the needs of patients and clinicians.To review and benchmark existing care plan templates that include recommendations for comorbid conditions, against four key criteria: (i) patient preferences, (ii) setting priorities, (iii) identifying conflicts and synergies between conditions, and (iv) setting dates for reviewing the care plan.Document analysis of Australian care plan templates published from 2006 to 2014 that incorporated recommendations for managing comorbid conditions in primary care.Sixteen templates were reviewed. All of the care plan templates addressed patient preference, but this was not done comprehensively. Only three templates included setting priorities. None assisted in identifying conflicts and synergies between conditions. Fifteen templates included setting a date for reviewing the care plan.Care plans are a well-used tool in primary care practice, but their current format perpetuates a single-disease approach to care, which works contrary to their intended purpose. Restructuring care plans to incorporate shared decision-making and attention to patient preferences may assist in shifting the focus back to the patient and their care needs

Nutritional education for community dwelling older people : a systematic review of randomised controlled trials

Original article can be found at : http://www.sciencedirect.com/ Copyright ElsevierObjectives : To evaluate the effectiveness of nutritional education or advice on physical function, emotional health, quality of life, nutritional indices, anthropometric indicators, mortality, service use and costs of care in people over 65 years of age living at home. Design : Systematic review of randomised controlled trials (RCTs). Data sources: PUBMED, CINAHL, PSYCINFO, the Cochrane Central Register of Controlled Trials and the National Research Register. Methods : We included studies evaluating nutritional education or advice for people aged 65 and over living in their own homes that measured one or more of the following outcomes: physical function, emotional well being, service use, dietary change and other anthropometric indicators. Studies were assessed for risk of bias on six domains. Due to high heterogeneity, results were not pooled but are reported narratively. Results : Twenty-three studies met our inclusion criteria. All but one of the interventions were delivered by health care professionals; ten were delivered by nurses. The review found evidence to suggest that nutritional education or advice can be used to positively influence diet and improve physical function. There was also evidence that some biochemical markers can be positively affected, although these are surrogate outcomes and are generally disease specific. Several studies indicated that complex interventions, with nutritional education as a component, also reduce depression. The evidence from this review on the impact on weight change was inconclusive. There was no evidence of an improvement in anxiety, quality of life, service use, costs of care or mortality. However, many studies were at moderate or high risk of bias, and for some outcomes the data were insufficient to make judgments about effectiveness. Conclusions : This review indicates that nutritional education or advice can positively affect physical function and diet, whilst complex interventions with nutritional education as a component, can reduce depression in people over 65 years who live at home. However, more research is needed to determine whether outcomes are influenced by types of intervention, morbidity, and socioeconomic circumstance of participants. Relevance to clinical practice: Nutritional education, alone or as part of a complex intervention, can improve diet and physical function and may reduce depression in the over 65s living at home.Peer reviewe

Hsc70-induced changes in clathrin-auxilin cage structure suggest a role for clathrin light chains in cage disassembly

The molecular chaperone, Hsc70, together with its co-factor, auxilin, facilitates the ATP-dependent removal of clathrin during clathrin-mediated endocytosis in cells. We have used cryo-electron microscopy to determine the 3D structure of a complex of clathrin, auxilin401-910 and Hsc70 at pH 6 in the presence of ATP, frozen within 20 seconds of adding Hsc70 in order to visualize events that follow the binding of Hsc70 to clathrin and auxilin before clathrin disassembly. In this map, we observe density beneath the vertex of the cage that we attribute to bound Hsc70. This density emerges asymmetrically from the clathrin vertex, suggesting preferential binding by Hsc70 for one of the three possible sites at the vertex. Statistical comparison with a map of whole auxilin and clathrin previously published by us reveals the location of statistically significant differences which implicate involvement of clathrin light chains in structural rearrangements which occur after Hsc70 is recruited. Clathrin disassembly assays using light scattering suggest that loss of clathrin light chains reduces the efficiency with which auxilin facilitates this reaction. These data support a regulatory role for clathrin light chains in clathrin disassembly in addition to their established role in regulating clathrin assembly