Who is “us” in “nothing about us without us”? Rethinking the politics of disability research

Disability research (and disability studies) emerged from the activism of disabled people who not only challenged oppressive legal and social structures, but also the ways in which research was used to legitimate that oppression. At the forefront of this challenge in the UK was Paul Hunt (Stone and Priestly, 1996). Hunt (1981) discredited the work of formerly esteemed researchers Eric Miller and Geraldina Gwynne by highlighting the ableist and unethical basis of their work. Miller and Gwynne had been commissioned to research the experiences of disabled people who were confined to institutional living following agitation by The Union of Impaired People Against Segregation (UIPAS). However, Miller and Gwynne's findings focused on improving the lot of practitioners rather than the quality of life and rights of disabled people. Hunt (1981) challenged Miller and Gwynne's claim to objective findings by demonstrating that they had prioritised the perspective of practitioners over disabled people and reiterated wider social prejudices about disability. For example, Miller and Gwynne argued that in residential care, "the essential task to be carried out is to help the inmates to make their transition from a social death [e.g. being/becoming disabled] to physical death" (1981:10). Miller and Gwynne's depiction of disabled people throughout their work was discriminatory and inflammatory, positioning disabled people as burdens and parasites. Hunt, however, subverted their discourse: "Miller and Gwynne make various references to residents as parasites and see us as essentially feeding off society not only economically but emotionally as well … The real parasites are those like Miller and Gwynne who grow fat by feeding on others miseries" (1981: 11). Hunt's analysis of the power and politics of research laid the foundations of disability research. He highlighted the politics of objectivity and accountability, exploitation and oppression and mandated that disability research should benefit disabled people

Rethinking the social impacts of the arts

The paper presents a critical discussion of the current debate over the social impacts of the arts in the UK. It argues that the accepted understanding of the terms of the debate is rooted in a number of assumptions and beliefs that are rarely questioned. The paper goes on to present the interim findings of a three‐year research project, which aims to rethink the social impact of the arts, with a view to determining how these impacts might be better understood. The desirability of a historical approach is articulated, and a classification of the claims made within the Western intellectual tradition for what the arts “do” to people is presented and discussed

Turning round the telescope. Centre-right parties and immigration and integration policy in Europe

This is an Author's Original Manuscript of 'Turning round the telescope. Centre-right parties and immigration and integration policy in Europe', whose final and definitive form, the Version of Record, has been published in the Journal of European Public Policy 15(3):315-330, 2008 [copyright Taylor & Francis], available online at: http://www.tandfonline.com/doi.org/10.1080/13501760701847341

Integrating Comprehensive Geriatric Assessment for people with COPD and frailty starting pulmonary rehabilitation: the Breathe Plus feasibility trial protocol.

One in five people with COPD also lives with frailty. People living with both COPD and frailty are at increased risk of poorer health and outcomes, and face challenges to completing pulmonary rehabilitation. Integrated approaches that are adapted to the additional context of frailty are required. The aim of the present study is to determine the feasibility of conducting a randomised controlled trial of an integrated Comprehensive Geriatric Assessment for people with COPD and frailty starting pulmonary rehabilitation. This is a multicentre, mixed-methods, assessor-blinded, randomised, parallel group, controlled feasibility trial ("Breathe Plus"; ISRCTN13051922). We aim to recruit 60 people aged ≥50 with both COPD and frailty referred for pulmonary rehabilitation. Participants will be randomised 1:1 to receive usual pulmonary rehabilitation, or pulmonary rehabilitation with an additional Comprehensive Geriatric Assessment. Outcomes (physical, psycho-social and service use) will be measured at baseline, 90 days and 180 days. We will also collect service and trial process data, and conduct qualitative interviews with a sub-group of participants and staff. We will undertake descriptive analysis of quantitative feasibility outcomes (recruitment, retention, missing data, blinding, contamination, fidelity), and framework analysis of qualitative feasibility outcomes (intervention acceptability and theory, outcome acceptability). Recommendations on progression to a full trial will comprise integration of quantitative and qualitative data, with input from relevant stakeholders. This study has been approved by a UK Research Ethics Committee (ref.: 19/LO/1402). This protocol describes the first study testing the feasibility of integrating a Comprehensive Geriatric Assessment alongside pulmonary rehabilitation, and testing this intervention within a mixed-methods randomised controlled trial

Microbial regulation of the L cell transcriptome.

L cells are an important class of enteroendocrine cells secreting hormones such as glucagon like peptide-1 and peptide YY that have several metabolic and physiological effects. The gut is home to trillions of bacteria affecting host physiology, but there has been limited understanding about how the microbiota affects gene expression in L cells. Thus, we rederived the reporter mouse strain, GLU-Venus expressing yellow fluorescent protein under the control of the proglucagon gene, as germ-free (GF). Lpos cells from ileum and colon of GF and conventionally raised (CONV-R) GLU-Venus mice were isolated and subjected to transcriptomic profiling. We observed that the microbiota exerted major effects on ileal L cells. Gene Ontology enrichment analysis revealed that microbiota suppressed biological processes related to vesicle localization and synaptic vesicle cycling in Lpos cells from ileum. This finding was corroborated by electron microscopy of Lpos cells showing reduced numbers of vesicles as well as by demonstrating decreased intracellular GLP-1 content in primary cultures from ileum of CONV-R compared with GF GLU-Venus mice. By analysing Lpos cells following colonization of GF mice we observed that the greatest transcriptional regulation was evident within 1 day of colonization. Thus, the microbiota has a rapid and pronounced effect on the L cell transcriptome, predominantly in the ileum

Integrating home-based exercise training with a hospital at home service for patients hospitalised with acute exacerbations of COPD: developing the model using accelerated experience-based co-design. International Journal of COPD

Background : Hospital at home (HaH) schemes allow early discharge of patients hospitalised with an acute exacerbation of chronic obstructive pulmonary disease (AECOPD). Traditional outpatient pulmonary rehabilitation (PR) following an AECOPD has an established evidence-base, but there are issues with low referral, uptake and completion. One commonly cited barrier to PR post-hospitalisation relates to poor accessibility. To address this, the aim of this project was to enrol service users (patients with COPD and informal carers) and healthcare professionals to co-design a model of care that integrates home-based exercise training within a HaH scheme for patients discharged from hospital following AECOPD. Methods : This accelerated experience-based co-design project included three audio-recorded stakeholder feedback events, using key “touchpoints” from previous qualitative interviews and a recent systematic review. Audio-recordings were inductively analysed using directed content analysis. An integrated model of care was then developed and finalised through two co-design groups, with the decision-making process facilitated by the tables of changes approach. Results : Seven patients with COPD, two informal carers and nine healthcare professionals (from an existing outpatient PR service and HaH scheme) participated in the stakeholder feedback events. Four key themes were identified: 1) individualisation, 2) progression and transition, 3) continuity between services, and 4) communication between stakeholders. Two patients with COPD, one informal carer and three healthcare professionals participated in the first joint co-design group, with five healthcare professionals attending a second co-design group. These achieved a consensus on the integrated model of care. The agreed model comprised face-to-face supervised, individually tailored home-based exercise training one to three times a week, delivered during HaH scheme visits where possible by a healthcare professional competent to provide both home-based exercise training and usual HaH care. Conclusion : An integrated model of care has been co-designed by patients with COPD, informal carers and healthcare professionals to address low uptake and completion of PR following AECOPD. The co-designed model of care has now been integrated within a well-established HaH scheme