British influence in Brussels had been far greater than recognised

Britain had far greater influence in Brussels since 1973 than has been recognised. For decades the UK was a driving and liberalising force when it came to the Single Market, enlargement, competition and trade, as well as foreign policy. Jonathan Faull (Kings College London), Piers Ludlow (LSE), and Laurent Warlouzet (Université du Littoral Côte d'Opale) outline the story of this significant and widespread British sway over the EU

End of life decision making when home mechanical ventilation is used to sustain breathing in Motor Neurone Disease: patient and family perspectives

BackgroundMotor Neurone Disease (MND) leads to muscle weakening, affecting movement, speech, and breathing. Home mechanical ventilation, particularly non-invasive ventilation (NIV), is used to alleviate symptoms and support breathing in people living with MND. While home mechanical ventilation can alleviate symptoms and improve survival, it does not slow the progression of MND. This study addresses gaps in understanding end-of-life decision-making in those dependent on home mechanical ventilation, considering the perspectives of patients, family members, and bereaved families.MethodsA UK-wide qualitative study using flexible interviews to explore the experiences of people living with MND (n = 16), their family members (n = 10), and bereaved family members (n = 36) about the use of home mechanical ventilation at the end of life.ResultsSome participants expressed a reluctance to discuss end-of-life decisions, often framed as a desire to “live for the day” due to the considerable uncertainty faced by those with MND. Participants who avoided end-of-life discussions often engaged in ‘selective decision-making’ related to personal planning, involving practical and emotional preparations. Many faced challenges in hypothesising about future decisions given the unpredictability of the disease, opting to make ‘timely decisions’ as and when needed. For those who became dependent on ventilation and did not want to discuss end of life, decisions were often ‘defaulted’ to others, especially once capacity was lost. ‘Proactive decisions’, including advance care planning and withdrawal of treatment, were found to empower some patients, providing a sense of control over the timing of their death. A significant proportion lacked a clear understanding of the dying process and available options.ConclusionsThe study highlights the complexity and evolution of decision-making, often influenced by the dynamic and uncertain nature of MND. The study emphasises the need for a nuanced understanding of decision-making in the context of MND

Understanding living with tracheostomy ventilation for motor neuron disease and the implications for quality of life: a qualitative study protocol

Introduction: Home mechanical ventilation can be used to manage symptoms of breathlessness and sustain life for people living with motor neuron disease (plwMND). In the UK, less than 1% of plwMND use tracheostomy ventilation (TV). This contrasts with some other countries, where rates are much higher. Due to a lack of evidence about its feasibility, cost-effectiveness or outcomes, TV is not covered in the UK National Institute for Health and Care Excellence guidance. Most plwMND receiving TV in the UK do so as an unplanned crisis intervention, which can lead to a prolonged hospital stay while a complex care package is arranged. There is insufficient literature addressing the burdens and benefits of TV, how it should be initiated and delivered, and how future care choices for plwMND can be supported. The aim of this research is to provide new understandings of the experiences of plwMND using TV, and those of family members and healthcare professionals (HCPs) involved in their care.Methods and analysis: A UK-wide qualitative study with two workstreams: (1) Patient focused case studies (n=6) including plwMND, family members and HCPs to focus on experiences and tasks of daily living from multiple perspectives. (2) Interviews with plwMND (n=10), family members, including bereaved family members (n=10) and HCPs (n=20) on broader experiences and issues relating to use of TV, such as ethical considerations and decision making.Ethics and dissemination: Ethical approval has been granted by the Leicester South Research Ethics Committee (22/EM/0256). All participants will be asked to provide electronic, written and/or audio recorded informed consent. Study findings will be disseminated in peer-reviewed journals and conference presentations and used to develop new resources for teaching and public information

Understanding Quality of Life for People with Motor Neurone Disease Who Use Tracheostomy Ventilation and Family Members: A Scoping Review

Tracheostomy ventilation (TV) can increase survival time for people living with motor neurone disease (MND); however, the use of TV varies between countries. Concerns regarding anticipated quality of life (QoL) are among the reasons given by healthcare professionals for not recommending this intervention, yet little is known about QoL in this context. This scoping review was conducted to examine the evidence on QoL for those with MND who use TV and family members involved in their care. Using the methodological guidance of the Joanna Briggs Institute, 23 papers were identified for inclusion, and findings were inductively analysed to identify key themes. We found that people living with MND tend to rate QoL post TV more positively than anticipated by healthcare professionals or family members. QoL was found to be related to positive relationships and activities the person could maintain. Feeling able to make a choice and an adequate level of financial resources were also important factors. Family members tended to experience lower QoL, associated with the uncertainty surrounding an emergency procedure and the complexity of subsequently required care. More evidence on QoL from the perspectives of people with MND who use TV is needed to support decision making and inform guidance

The International Fight Against Terrorism: A Colloquium on the Prospects for Further Cooperation Between the European Union and the United States

Members of the European Commission, European Parliament and Council of the EU joined colleagues and counterparts from the U.S. Congress, Department of Justice and Department of Homeland Security for a colloquium focusing on a range of transcendent issues in the international fight against terrorism, including common challenges and achievements, data mining, and the conflict between freedom of the individual and governmental measures taken to protect civil society

Planetary Defense team project: READI (Roadmap for EArth Defense Initiatives)

Planetary Defense is a complex problem, not well understood by policy makers and the general public. The recent Chelyabinsk incident in Russia created temporary international attention but has failed to effectively stimulate public action. The lack of long-term attention to cosmic hazards has resulted in limited funding to defend our planet. Hence, it is hard to realistically address this challenge and achieve the high test and operational readiness needed for an effective Planetary Defense strategy. To address this problem, we have created a set of recommendations for the development of a Planetary Defense Program, for the purpose of contributing to the protection of Earth from asteroids and comets. The SSP15 READI Project focused on threats for which there is only a short-term warning, specifically a warning of two years or less from detection of the object to impact. We have provided recommendations in five areas of Planetary Defense including detection and tracking, deflection techniques, global collaboration, outreach and education, and evacuation and recovery. We have applied this set of recommendations in a narrative scenario to make our report more impactful and engaging. We contrast optimistic and pessimistic outcomes for a comet threat, differing from each other in terms of the level of readiness achieved during the years leading up to the discovery of the threat. In our optimistic scenario, the deflection system has achieved high test and operational readiness. The world’s governments have realized the importance of being prepared against cosmic hazards and put in place all of the necessary measures for a successful defense, leading to a positive deflection of the comet. In contrast, in the pessimistic scenario no preparation is done before the detection, and the comet strikes a heavily populated area releasing energy equivalent to 80 times the most powerful nuclear bomb ever detonated. The recommendations that we have identified in this report constitute a roadmap to avoid this horrible outcome, and we believe they should be taken seriously and swiftly implemented

Towards a Pharmacophore for Amyloid

Diagnosing and treating Alzheimer's and other diseases associated with amyloid fibers remains a great challenge despite intensive research. To aid in this effort, we present atomic structures of fiber-forming segments of proteins involved in Alzheimer's disease in complex with small molecule binders, determined by X-ray microcrystallography. The fiber-like complexes consist of pairs of β-sheets, with small molecules binding between the sheets, roughly parallel to the fiber axis. The structures suggest that apolar molecules drift along the fiber, consistent with the observation of nonspecific binding to a variety of amyloid proteins. In contrast, negatively charged orange-G binds specifically to lysine side chains of adjacent sheets. These structures provide molecular frameworks for the design of diagnostics and drugs for protein aggregation diseases

The Enforcement of Competition Policy in the European Community: A Mature System

In what follows, I will review a number of policy issues and offer comments in arguing the case for the maturity of the EC\u27s enforcement system. I will concentrate exclusively on antitrust enforcement, but it should not be forgotten that state aids policy is also an important part of the EC\u27s competition policy