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

这一拟议的公共参与方案使用创造性的方法，与患有能量限制慢性病(ELCI)的边缘化性别人群共同制作医疗和社会护理的投机性场景。ELCI包括以能量损伤为主要症状的情况，如神经系统、肌肉骨骼、自身免疫性疾病、ME/CFS、纤维肌痛和长时间寒战。2018年的估计表明，英国每3名处于工作年龄的残疾人中就有1人出现这种症状。新冠肺炎的流行大大增加了这一数字，英国有210万人患有长冠状病毒。这一拟议的公共参与方案建立在一个研究项目的基础上，该项目分析了慢性病纳入收集的约19.5万字的定性调查数据，这些数据记录了约900名患有ELCI的边缘化性别患者在健康和社会护理方面的经验，以及对未来服务改善的建议。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卫生保健专业人员(HCP)的接触中没有得到倾听。ELCI患者在残疾人口中占很大一部分，而且还在不断增长，但他们的声音和生活经历往往被忽视。在设计未来的健康和社会护理时，必须考虑ELCI患者的需求。这一公共参与工作方案回应了这一迫切需要。许多ELCI在女性中更常见，医学上基于性别的歧视加剧了人们的怀疑和解雇许多有ELCI经验的人。除了顺位女性，医疗保健中的性别偏见影响到更广泛的边缘化性别人群，包括变性人、非双性恋者、性别酷儿和双性人。此外，LGBTQIA+的人在获得医疗保健时面临着各种障碍。医疗领域的种族主义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，来自这些群体的患有ELCI的人可能会在多种方面被边缘化。拟议的公共参与计划建立在之前的研究项目的基础上，以调查分析为起点，在残疾艺术家的推动下，举办一系列创造性的研讨会，共同创造猜测场景，想象为ELCI患者提供更好的健康和社会护理。参加研讨会的人将被要求以两种方式想象未来的健康和社会护理：(1)未来将被诊断为ELCI的人的未来改善；(2)希望随着ELCI的衰老，他们未来的健康和社会护理。参与的艺术家将使用一系列的创作方法来促进这些投机性场景的想象力，包括绘画、创意写作、锌制作、摄影、录音和漫画创作。除了在线同步研讨会外，还将有异步选项，允许人们以自己的速度和自己的时间回应创造性的提示。除了向任何患有ELCI的边缘化性别的人开放研讨会外，还将为ELCI患者设立专门的小组，他们认同(1)LGBTQIA+和(2)穆斯林妇女。还将与卫生保健专业人员一起举办更多的讲习班。创意产出将包括：从锌制作讲习班产生的工作整理的杂志；根据创意写作讲习班的片段以播客形式进行的音频叙述；展示讲习班的照片、写作和绘画的网站；以及一本漫画书，说明未来医疗和社会保健的可能性。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《Pulse》杂志(针对全科医生)撰写一篇文章，以及一个教学工具包，以便将创造性成果用于当前和未来的卫生保健专业人员的教育。这些活动将通过网络研讨会推出。

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.