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      ‘Do they ever think about people like us?': The experiences of people with learning disabilities in England and Scotland during the COVID-19 pandemic

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          Abstract

          People with learning disabilities in England and Scotland have experienced an increased risk of illness and death during the COVID-19 pandemic. Drawing on data of a longitudinal qualitative study with 71 disabled people and 31 disability organisations, this article examines the experiences of 24 people with learning disabilities in England and Scotland during the pandemic, reflecting on what rendered them vulnerable and placed them at risk. Qualitative interviews were conducted with participants and key informants at two timepoints; June–August 2020 and February–April 2021. Findings emerged across four key themes: failure to plan for the needs of people with learning disabilities; the suspension and removal of social care; the impact of the pandemic on people’s everyday routines; and lack of vaccine prioritisation. The inequalities experienced by people with learning disabilities in this study are not particular to the pandemic. We explore the findings in the context of theoretical frameworks of vulnerability, including Fineman’s conceptualisation of a ‘vulnerability paradigm’. We conclude that the structured marginalisation of people with disabilities, entrenched by government action and inaction, have created and exacerbated their vulnerability. Structures, policies and action must change.

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          Most cited references51

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          Multiple physical and mental health comorbidity in adults with intellectual disabilities: population-based cross-sectional analysis

          Background Adults with intellectual disabilities have increased early mortality compared with the general population. However, their extent of multimorbidity (two or more additional conditions) compared with the general population is unknown, particularly with regards to physical ill-health, as are associations between comorbidities, neighbourhood deprivation, and age. Methods We analysed primary health-care data on 1,424,378 adults registered with 314 representative Scottish practices. Data on intellectual disabilities, 32 physical, and six mental health conditions were extracted. We generated standardised prevalence rates by age-groups, gender, and neighbourhood deprivation, then calculated odds ratio (OR) and 95 % confidence intervals (95 % CI) for adults with intellectual disabilities compared to those without, for the prevalence, and number of condition. Results Eight thousand fourteen (0.56 %) had intellectual disabilities, of whom only 31.8 % had no other conditions compared to 51.6 % without intellectual disabilities (OR 0.26, 95 % 0.25–0.27). The intellectual disabilities group were significantly more likely to have more conditions, with the biggest difference found for three conditions (10.9 % versus 6.8 %; OR 2.28, 95 % CI 2.10–2.46). Fourteen physical conditions were significantly more prevalent, and four cardiovascular conditions occurred less frequently, as did any cancers, and chronic obstructive pulmonary diseases. Five of the six mental health conditions were significantly more prevalent. For the adults with intellectual disabilities, no gradient was seen in extent of multimorbidity with increasing neighbourhood deprivation; indeed findings were similar in the most affluent and most deprived areas. Co-morbidity increased with age but is highly prevalent at all ages, being similar at age 20–25 to 50–54 year olds in the general population. Conclusions Multi-morbidity burden is greater, occurs at much earlier age, and the profile of health conditions differs, for adults with intellectual disabilities compared with the general population. There is no association with neighbourhood deprivation; people with intellectual disabilities need focussed services irrespective of where they live, and at a much earlier age than the general population. They require specific initiatives to reduce inequalities. Electronic supplementary material The online version of this article (doi:10.1186/s12875-015-0329-3) contains supplementary material, which is available to authorized users.
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            Risks of covid-19 hospital admission and death for people with learning disability: population based cohort study using the OpenSAFELY platform

            Objective To assess the association between learning disability and risk of hospital admission and death from covid-19 in England among adults and children. Design Population based cohort study on behalf of NHS England using the OpenSAFELY platform. Setting Patient level data were obtained for more than 17 million people registered with a general practice in England that uses TPP software. Electronic health records were linked with death data from the Office for National Statistics and hospital admission data from NHS Secondary Uses Service. Participants Adults (aged 16-105 years) and children (<16 years) from two cohorts: wave 1 (registered with a TPP practice as of 1 March 2020 and followed until 31 August 2020); and wave 2 (registered 1 September 2020 and followed until 8 February 2021). The main exposure group consisted of people on a general practice learning disability register; a subgroup was defined as those having profound or severe learning disability. People with Down’s syndrome and cerebral palsy were identified (whether or not they were on the learning disability register). Main outcome measure Covid-19 related hospital admission and covid-19 related death. Non-covid-19 deaths were also explored. Results For wave 1, 14 312 023 adults aged ≥16 years were included, and 90 307 (0.63%) were on the learning disability register. Among adults on the register, 538 (0.6%) had a covid-19 related hospital admission; there were 222 (0.25%) covid-19 related deaths and 602 (0.7%) non-covid deaths. Among adults not on the register, 29 781 (0.2%) had a covid-19 related hospital admission; there were 13 737 (0.1%) covid-19 related deaths and 69 837 (0.5%) non-covid deaths. Wave 1 hazard ratios for adults on the learning disability register (adjusted for age, sex, ethnicity, and geographical location) were 5.3 (95% confidence interval 4.9 to 5.8) for covid-19 related hospital admission and 8.2 (7.2 to 9.4) for covid-19 related death. Wave 2 produced similar estimates. Associations were stronger among those classified as having severe to profound learning disability, and among those in residential care. For both waves, Down’s syndrome and cerebral palsy were associated with increased hazards for both events; Down’s syndrome to a greater extent. Hazard ratios for non-covid deaths followed similar patterns with weaker associations. Similar patterns of increased relative risk were seen for children, but covid-19 related deaths and hospital admissions were rare, reflecting low event rates among children. Conclusions People with learning disability have markedly increased risks of hospital admission and death from covid-19, over and above the risks observed for non-covid causes of death. Prompt access to covid-19 testing and healthcare is warranted for this vulnerable group, and prioritisation for covid-19 vaccination and other targeted preventive measures should be considered.
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              A thematic analysis into the experiences of people with a mild intellectual disability during the COVID-19 lockdown period

              Background. The COVID-19 pandemic is expected to have a substantial impact on people with an intellectual disability. The goal of the current study was to explore the experiences and needs of people with a mild intellectual disability during the COVID-19 lockdown period in the Netherlands. Method. A descriptive qualitative methodology was conducted, using semi-structured individual interviews with six people with a mild intellectual disability. Data were analysed thematically. Results. Three overarching themes were found: (i) Missing social contact and having people close; (ii) Being housebound has changed my daily life; and (iii) Hard to understand the preventive measures. Conclusions. Important insights into the experiences and needs of people with a mild intellectual disability during the COVID-19 lockdown period were gained. These insights are valuable with respect to a potential second COVID-19 wave or a future infection-outbreak.
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                Author and article information

                Contributors
                Journal
                Crit Soc Policy
                Crit Soc Policy
                CSP
                spcsp
                Critical Social Policy
                SAGE Publications (Sage UK: London, England )
                0261-0183
                1461-703X
                27 June 2022
                27 June 2022
                : 02610183221109147
                Affiliations
                [1-02610183221109147]Ringgold 4906, universityLondon School of Hygiene & Tropical Medicine; , England
                [2-02610183221109147]Ringgold 3526, universityUniversity of Glasgow; , Scotland
                [3-02610183221109147]Ringgold 4906, universityUniversity of Strathclyde; , Scotland
                [4-02610183221109147]Ringgold 4906, universityLondon School of Hygiene & Tropical Medicine; , England
                [5-02610183221109147]Ringgold 3527, universityUniversity of Glasgow; , Scotland
                [6-02610183221109147]Ringgold 4906, universityLondon School of Hygiene & Tropical Medicine; , England
                Author notes
                [*]Nathaniel Scherer, London School of Hygiene & Tropical Medicine, England. Email: nathaniel.scherer@ 123456lshtm.ac.uk
                Article
                10.1177_02610183221109147
                10.1177/02610183221109147
                9240722
                fef207b4-8f6c-492b-b1e5-7c4478b1c6fb
                © The Author(s) 2022

                This article is distributed under the terms of the Creative Commons Attribution 4.0 License ( https://creativecommons.org/licenses/by/4.0/) which permits any use, reproduction and distribution of the work without further permission provided the original work is attributed as specified on the SAGE and Open Access page ( https://us.sagepub.com/en-us/nam/open-access-at-sage).

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                Funding
                Funded by: UK Research and Innovation, FundRef https://doi.org/10.13039/100014013;
                Award ID: ES/V004069/1
                Categories
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                Custom metadata
                corrected-proof
                ts19

                covid-19,disability,health,learning disabilities,vulnerability

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