Negotiating a third space for participatory research with people with learning disabilities: an examination of boundaries and spatial practices

The focus of this paper is participatory research with and by people with learning disabilities. Drawing on presentations and discussions that took place across five funded seminars we use the concepts of space and boundaries through which to examine the development of a shared new spatial practice through creative responses to a number of challenges. We examine the boundaries that exist between participatory research and non-participatory research' participatory research with people with learning disabilities and participatory research with other groups and between different stakeholders of participatory research with people with learning disabilities. With a particular focus on participatory data analysis and participatory research with people with high support needs we identify a number of ways in boundaries are being opened. We argue that the pushing of new boundaries opens up both new and messy spaces and that both are important for the development of participatory research methods

Experiencing sense of place in virtual and physical Avebury.

This paper discusses the findings from a project to construct a simulation of Avebury henge, a Late Neolithic/ Early Bronze Age monument in SW Britain, in a 3D, virtual world environment. The aims of the study were to explore the archaeological research and interpretation necessary to plan and construct such a simulation in an interactive, online environment, to identify which aspects of visualisation and soundscape design appear to have the greatest impact upon users’ sense of place in the virtual simulation and to explore the experiences of a small group of users in the virtual simulation and the effects of those experiences upon their sense of place at the physical site. The findings from this project demonstrated that in undertaking a simulation of an ancient site, a core set of sources need to be selected to create the main parts of the simulation. There is often much debate in archaeological literature regarding the way in which archaeological findings are interpreted, and a different virtual Avebury would be constructed if different interpretations had been chosen. Any simulation of an ancient site should therefore clearly recognise and state the basis upon which it has been designed. The evaluation showed that responses to virtual environments, and the resulting effect upon responses to physical environments, are complex and personal, resulting in a range of experiences and perceptions, suggesting that the range of users’ experiences might be a more significant issue than attempting to find any general consensus on user reactions to simulated ancient sites

Surviving through story: Experiences of people with learning disabilities in the covid19 pandemic 2020–2021

Background: History starts from where we are now ‐ it is not just things that happened a long time ago. The global pandemic began in 2019. It has changed the lives of people with learning disabilities. We began our project during the first lockdown in April 2020. We came together to set up a website to collect stories and support and learn from each other about how to survive and keep strong. Storytelling is very important because it helps us understand what is going on. It is also a way to capture the history of people with learning disabilities at a very difficult time. We know that thousands of people with learning disabilities became ill and died in the flu epidemic of 1918. But nobody recorded their stories in their own words. We want to make sure this does not happen again, so we created an archive to help us remember. Methods: The project was managed with an advisory group of people with and without learning disabilities who met monthly to monitor the collection and analysis of stories on the site. A site audit was performed regularly to determine the themes in the stories and who had submitted. The article describes the progress of the project, the stories we have shared, and the challenges we have faced. Conclusions: We discuss how people with learning disabilities have been presented in the media and our views about the way we are not heard, or always shown as vulnerable victims. We have found many sad stories, but also positive ones about people being creative and supportive. We look forward to the future and share our ideas about how society could be different and more inclusive. Being part of this project has given us confidence to know we are not alone, and shown us how we can help with the recovery

Multiorgan MRI findings after hospitalisation with COVID-19 in the UK (C-MORE): a prospective, multicentre, observational cohort study

Introduction: The multiorgan impact of moderate to severe coronavirus infections in the post-acute phase is still poorly understood. We aimed to evaluate the excess burden of multiorgan abnormalities after hospitalisation with COVID-19, evaluate their determinants, and explore associations with patient-related outcome measures. Methods: In a prospective, UK-wide, multicentre MRI follow-up study (C-MORE), adults (aged ≥18 years) discharged from hospital following COVID-19 who were included in Tier 2 of the Post-hospitalisation COVID-19 study (PHOSP-COVID) and contemporary controls with no evidence of previous COVID-19 (SARS-CoV-2 nucleocapsid antibody negative) underwent multiorgan MRI (lungs, heart, brain, liver, and kidneys) with quantitative and qualitative assessment of images and clinical adjudication when relevant. Individuals with end-stage renal failure or contraindications to MRI were excluded. Participants also underwent detailed recording of symptoms, and physiological and biochemical tests. The primary outcome was the excess burden of multiorgan abnormalities (two or more organs) relative to controls, with further adjustments for potential confounders. The C-MORE study is ongoing and is registered with ClinicalTrials.gov, NCT04510025. Findings: Of 2710 participants in Tier 2 of PHOSP-COVID, 531 were recruited across 13 UK-wide C-MORE sites. After exclusions, 259 C-MORE patients (mean age 57 years [SD 12]; 158 [61%] male and 101 [39%] female) who were discharged from hospital with PCR-confirmed or clinically diagnosed COVID-19 between March 1, 2020, and Nov 1, 2021, and 52 non-COVID-19 controls from the community (mean age 49 years [SD 14]; 30 [58%] male and 22 [42%] female) were included in the analysis. Patients were assessed at a median of 5·0 months (IQR 4·2–6·3) after hospital discharge. Compared with non-COVID-19 controls, patients were older, living with more obesity, and had more comorbidities. Multiorgan abnormalities on MRI were more frequent in patients than in controls (157 [61%] of 259 vs 14 [27%] of 52; p<0·0001) and independently associated with COVID-19 status (odds ratio [OR] 2·9 [95% CI 1·5–5·8]; padjusted=0·0023) after adjusting for relevant confounders. Compared with controls, patients were more likely to have MRI evidence of lung abnormalities (p=0·0001; parenchymal abnormalities), brain abnormalities (p<0·0001; more white matter hyperintensities and regional brain volume reduction), and kidney abnormalities (p=0·014; lower medullary T1 and loss of corticomedullary differentiation), whereas cardiac and liver MRI abnormalities were similar between patients and controls. Patients with multiorgan abnormalities were older (difference in mean age 7 years [95% CI 4–10]; mean age of 59·8 years [SD 11·7] with multiorgan abnormalities vs mean age of 52·8 years [11·9] without multiorgan abnormalities; p<0·0001), more likely to have three or more comorbidities (OR 2·47 [1·32–4·82]; padjusted=0·0059), and more likely to have a more severe acute infection (acute CRP >5mg/L, OR 3·55 [1·23–11·88]; padjusted=0·025) than those without multiorgan abnormalities. Presence of lung MRI abnormalities was associated with a two-fold higher risk of chest tightness, and multiorgan MRI abnormalities were associated with severe and very severe persistent physical and mental health impairment (PHOSP-COVID symptom clusters) after hospitalisation. Interpretation: After hospitalisation for COVID-19, people are at risk of multiorgan abnormalities in the medium term. Our findings emphasise the need for proactive multidisciplinary care pathways, with the potential for imaging to guide surveillance frequency and therapeutic stratification

The Voluntary Sector

The voluntary sector has played a key role in shaping the development of policy and services for people with learning disabilities since 1948. The post-war emergence of parents’ organizations such as Mencap helped to initiate a tangible shift in community care focus, moving the emphasis away from a controlling ideology, towards one that placed care and protection at its centre. In more recent years, the growth of advocacy and user groups has been highly influential in shifting the focus once again, this time towards a framework of citizenship, in which people’s right to live as valued and active members of the community is emphasized. However, the voluntary sector in learning disability has been characterized by fragmentation, leading to tensions and dissent. The extent to which this disunity has been damaging to the voluntary sector’s ability to influence learning disability policy and practice remains ambiguous. Recent research undertaken by the author in one local authority indicates that voluntary groups continue to play a key role in orientating debates towards a citizenship agenda, although relations with the statutory authorities remain fluid and at times uncertain, reflecting the historical picture

Resistance in Mencap's History

Since its inception in 1946, Mencap has grown to become the largest voluntary organization with a learning disability remit in the UK. Over the course of its history, Mencap has resisted and challenged society’s attitudes and prejudices towards people with learning difficulties whilst fighting for important changes in policy and service provision. Mencap adopted a discourse of resistance from its earliest days which helped to raise the organization’s profile and aid its growth. However, Mencap has also been the subject of resistance - from within its own organizational structures, as well as from service users, parents and academics. The growth of the self-advocacy movement, alongside changing assumptions about the rights of people with learning difficulties and the extension of Mencap’s activities into widespread service provision, challenged Mencap to renegotiate its identity as an organization both for and of people with learning difficulties in the 1990s. Resistance has been a key theme in Mencap’s history, but has emerged in a complex array of forms