Imagining Better Futures of Health and Social Care with and for People with Energy Limiting Chronic Illnesses

这项拟议的公众参与计划使用创造性的方法，与患有能量限制慢性病（ELCI）的边缘化性别的人共同制作健康和社会护理的推测性情景。ELCI包括以能量受损为主要症状的疾病，例如神经系统、肌肉骨骼、自身免疫疾病、ME/CFS、纤维肌痛和长期新冠肺炎。2018年的估计表明，英国三分之一的工作年龄残疾人会出现这种症状。2019冠状病毒病大流行显著增加了这一点，英国有210万人患有长期冠状病毒病。这一拟议的公众参与计划建立在一个研究项目的基础上，该项目分析了慢性病包容性收集的约195，000字的定性调查数据，记录了约900名边缘化性别的人与ELCI的健康和社会护理经验以及未来服务改进的建议。在这些调查受访者中，75%的人表示，他们经常或非常经常在与医疗保健专业人员（HCP）接触时不被倾听。ELCI患者是残疾人口中很大且不断增长的一部分，但他们的声音和生活经历往往被忽视。在设计未来的卫生和社会护理时，必须考虑ELCI患者的需求。这项公众参与工作计划正是回应了这一迫切需要。许多ELCI在女性中更常见，医学中基于性别的歧视加剧了许多有ELCI经验的人的怀疑和解雇。除了顺式女性，医疗保健中的性别偏见更广泛地影响着边缘化性别的人，包括变性人，非二元性人，性别酷儿和双性人。此外，LGBTQIA+人群在获得医疗保健时面临各种障碍。医疗保健中的种族歧视历史也导致了不平等，制度化的伊斯兰恐惧症意味着穆斯林更有可能被医疗专业人员解雇。因此，这些群体中的ELCI患者可能会以多种方式被边缘化。拟议的公众参与计划以先前的研究项目为基础，以调查分析为起点，在残疾艺术家的协助下，举办一系列创意工作坊，共同创造想象ELCI患者更好的健康和社会关怀的投机情景。参与研讨会的人将被要求从两个方面想象未来的健康和社会护理：（1）未来将被诊断患有ELCI的人的未来改善;（2）随着ELCI的年龄增长，他们对未来健康和社会护理的希望。参与的艺术家将利用一系列的创作方法来促进这些投机场景的想象力，包括绘画，创意写作，杂志制作，摄影，录音和漫画创作。除了在线同步研讨会外，还将提供异步选项，允许人们按照自己的节奏和时间对创意提示做出反应。除了向ELCI边缘化性别的任何人开放的研讨会外，还将为ELCI患者提供专门的小组，他们被认为是（1）LGBTQIA+和（2）穆斯林妇女。还将与保健专业人员举办更多的讲习班。创意产出将包括：从杂志制作讲习班制作的作品中整理出来的杂志;根据创意写作讲习班的作品制作的播客形式的音频叙述;展示讲习班照片、写作和绘画的网站;以及说明未来保健和社会保健可能性的漫画书。还将为参与管理卫生和社会保健的决策者编写一份政策简报，并为《脉搏》杂志（以全科医生为对象）撰写一篇文章，同时还将编写沿着一个教学工具包，以便将创造性产出用于对当前和未来卫生保健专业人员的教育。这些将通过网络研讨会启动。

This proposed public engagement programme uses creative methods to co-produce speculative scenarios of health and social care with people of marginalised genders with Energy Limiting Chronic Illness (ELCI). ELCIs include conditions in which energy impairment is a key symptom, e.g. neurological, musculoskeletal, auto-immune diseases, ME/CFS, fibromyalgia and Long Covid. Estimates in 2018 suggest 1 in 3 disabled people of working age in the UK experience such symptoms. The covid-19 pandemic has significantly increased this with 2.1 million people in the UK living with Long Covid. This proposed programme of public engagement builds from a research project which analysed around 195,000 words of qualitative survey data collected by Chronic Illness Inclusion that documents the experiences of health and social care, and suggestions for future service improvement, by around 900 people of marginalised gender with ELCI. Of those survey respondents, 75% said they often, or very often, were not listened to in encounters with Health Care Professionals (HCPs). People with ELCI are a large and growing section of the disabled population yet their voices and lived experiences are often overlooked. There is an imperative to consider the needs of people with ELCI in the design of future health and social care. This programme of public engagement work responds to that imperative. Many ELCIs are more common in women, and gender-based discrimination in medicine exacerbates the disbelief and dismissal many people with ELCI experience. In addition to cis-women, gender bias in health care affects people of marginalised genders more broadly, including transgender, nonbinary, gender queer and intersex people. Moreover, LGBTQIA+ people face a variety of barriers when accessing healthcare. Histories of racist discrimination in medical care also lead to inequalities, and institutionalised islamophobia means Muslim people are more likely to be dismissed by medical professionals. People from these groups who have ELCI may therefore be marginalised in multiple ways.The proposed programme of public engagement builds from the previous research project, using the survey analysis as a starting point from which to run a series of creative workshops, facilitated by disabled artists, to co-create speculative scenarios that imagine better health and social care for people with ELCI. People involved in the workshops will be asked to imagine future health and social care in two ways: (1) future improvements for people who will be diagnosed with ELCI in the future; and (2) hopes for future health and social care for themselves as they age with ELCI. The artists involved will utilise a range of creative methods to facilitate the imagination of these speculative scenarios, including drawing, creative writing, zine making, photography, audio recordings and comic creation. In addition to online, synchronous workshops, there will be asynchronous options, allowing people to respond to creative prompts at their own pace and in their own time. In addition to workshops open to anyone of marginalised gender with ELCI, there will be dedicated groups for people with ELCI who identify as (1) LGBTQIA+ and (2) Muslim women. Further workshops will be held with health care professionals. Creative outputs will include: zines collated from the work produced in zine making workshops; an audio narrative in podcast form based on pieces from creative writing workshops; a website showcasing photographs, writing and drawings from the workshops; and a comic book illustrating possibilities for future health and social care. A policy brief targeted at decision makers involved in managing health and social care, and an article for Pulse magazine (which targets GPs) will also be produced, along with a pedagogical toolkit to allow the creative outputs to be used in education for current and future health care professionals. These will be launched via a webinar.