{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,11,4]],"date-time":"2026-11-04T20:35:39Z","timestamp":1793824539320,"version":"4.6.1"},"reference-count":46,"publisher":"Springer Science and Business Media LLC","issue":"1","license":[{"start":{"date-parts":[[2022,1,28]],"date-time":"2022-01-28T00:00:00Z","timestamp":1643328000000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0"},{"start":{"date-parts":[[2022,1,28]],"date-time":"2022-01-28T00:00:00Z","timestamp":1643328000000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0"}],"funder":[{"name":"NIHR Yorkshire and Humber Patient Safety Translational Research Centre","award":["PSTRC-2016-006"],"award-info":[{"award-number":["PSTRC-2016-006"]}]}],"content-domain":{"domain":["link.springer.com"],"crossmark-restriction":false},"short-container-title":["Int J Equity Health"],"published-print":{"date-parts":[[2022,12]]},"abstract":"<jats:title>Abstract<\/jats:title>\n                  <jats:sec>\n                    <jats:title>Background<\/jats:title>\n                    <jats:p>Failures in care for people with learning disabilities have been repeatedly highlighted and remain an international issue, exemplified by a disparity in premature death due to poor quality and unsafe care. This needs urgent attention. Therefore, the aim of the study was to understand the care experiences of people with learning disabilities, and explore the potential patient safety issues they, their carers and families raised.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Methods<\/jats:title>\n                    <jats:p>Two data sources exploring the lived experience of care for people with learning disabilities were synthesised using an integrative approach, and explored using reflexive thematic analysis. This comprised two focus groups with a total of 13 people with learning disabilities and supportive staff, and 377 narratives posted publicly via the feedback platform Care Opinion.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Results<\/jats:title>\n                    <jats:p>The qualitative exploration highlighted three key themes. Firstly, health and social care systems operated with varying levels of rigidity. This contributed to an inability to effectively cater to; complex and individualised care needs, written and verbal communication needs and needs for adequate time and space. Secondly, there were various gaps and traps within systems for this population. This highlighted the importance of care continuity, interoperability and attending to the variation in support provision from professionals. Finally, essential \u2018dependency work\u2019 was reliant upon social capital and fulfilled by paid and unpaid caring roles to divergent extents, however, advocacy provided an additional supportive safety net.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Conclusions<\/jats:title>\n                    <jats:p>A series of safety inequities have been identified for people with learning disabilities, alongside potential protective buffers. These include; access to social support and advocacy, a malleable system able to accommodate for individualised care and communication needs, adequate staffing levels, sufficient learning disabilities expertise within and between care settings, and the interoperability of safety initiatives. In order to attend to the safety inequities for this population, these factors need to be considered at a policy and organisational level, spanning across health and social care systems. Findings have wide ranging implications for those with learning disabilities, their carers and families and health and social care providers, with the potential for international learning more widely.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1186\/s12939-021-01612-1","type":"journal-article","created":{"date-parts":[[2022,1,28]],"date-time":"2022-01-28T05:02:43Z","timestamp":1643346163000},"update-policy":"https:\/\/doi.org\/10.1007\/springer_crossmark_policy","source":"Crossref","is-referenced-by-count":36,"title":["Systemic safety inequities for people with learning disabilities: a qualitative integrative analysis of the experiences of English health and social care for people with learning disabilities, their families and carers"],"prefix":"10.1186","volume":"21","author":[{"ORCID":"https:\/\/orcid.org\/0000-0001-6518-9965","authenticated-orcid":false,"given":"Lauren","family":"Ramsey","sequence":"first","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Abigail","family":"Albutt","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Kayley","family":"Perfetto","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Naomi","family":"Quinton","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"John","family":"Baker","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Gemma","family":"Louch","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Jane","family":"O\u2019Hara","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"297","published-online":{"date-parts":[[2022,1,28]]},"reference":[{"key":"1612_CR1","unstructured":"National Patient Safety Agency (NPSA). Great Britain. Understanding the patient safety issues for people with learning disabilities. National Patient Safety Agency; 2004."},{"key":"1612_CR2","volume-title":"Valuing People: A New Strategy for Learning Disability for the 21st Century. A White Paper","author":"Department of Health","year":"2001","unstructured":"Department of Health. Valuing People: A New Strategy for Learning Disability for the 21st Century. A White Paper. London: Department of Health; 2001. https:\/\/www.datadictionary.nhs.uk\/data_dictionary\/nhs_business_definitions\/l\/learning_disability_de.asp?shownav=1. Accessed 15.11.2020."},{"key":"1612_CR3","unstructured":"NHS Digital Health and Care of People with Learning Disabilities, Experimental Statistics: 2018 to 2019 https:\/\/digital.nhs.uk\/data-and-information\/publications\/statistical\/health-and-care-of-people-with-learning-disabilities\/experimental-statistics-2018-to-2019 Accessed 13.11.2020."},{"key":"1612_CR4","volume-title":"Confidential Inquiry into premature deaths of people with learning disabilities (CIPOLD)","author":"P Heslop","year":"2013","unstructured":"Heslop P, Blair P, Fleming P, Hoghton M, Marriott A, Russ L. Confidential Inquiry into premature deaths of people with learning disabilities (CIPOLD). Bristol: Norah Fry Research Centre; 2013."},{"key":"1612_CR5","unstructured":"University of Bristol Norah Fry Centre for Disability Studies. The Learning Disabilities Mortality Review (LeDeR) Programme. Annual Report. London: Healthcare Improvement Quality Partnership. 2016 http:\/\/www.bristol.ac.uk\/media-library\/sites\/sps\/leder\/LeDeR%20annual%20report%20October%202016_FINAL%20v8.pdf."},{"key":"1612_CR6","unstructured":"University of Bristol Norah Fry Centre for Disability Studies. The Learning Disabilities Mortality Review (LeDeR) Programme. Annual Report. London: Healthcare Improvement Quality Partnership. 2017 http:\/\/www.bristol.ac.uk\/media-library\/sites\/sps\/leder\/leder_annual_report_2016-2017.pdf."},{"key":"1612_CR7","unstructured":"University of Bristol Norah Fry Centre for Disability Studies. The Learning Disabilities Mortality Review (LeDeR) Programme. Annual Report. London: Healthcare Improvement Quality Partnership. 2018.http:\/\/www.bristol.ac.uk\/media-library\/sites\/sps\/leder\/LeDeR_Annual_Report_2018%20published%20May%202019.pdf."},{"key":"1612_CR8","unstructured":"University of Bristol Norah Fry Centre for Disability Studies. The Learning Disabilities Mortality Review (LeDeR) Programme. Annual Report. London: Healthcare Improvement Quality Partnership. 2019. http:\/\/www.bristol.ac.uk\/media-library\/sites\/sps\/leder\/LeDeR_2019_annual_report_FINAL2.pdf Accessed 10.11.20."},{"key":"1612_CR9","unstructured":"O\u2019Hara J. Themed Review Better Health and Care for All. National Institute for Health Research (NIHR) https:\/\/content.nihr.ac.uk\/nihrdc\/themedreview-04326-BCAHFA\/Better-Health_Care-For-FINALWEB.pdf Accessed 05.10.21."},{"key":"1612_CR10","unstructured":"Louch G, Albutt A, Harlow-Trigg J, Moore. S, Smyth K, Ramsey L, Jane O. (In Prep) Exploring patient safety outcomes for people with learning disabilities in acute hospital settings: A scoping review, BMJ Open."},{"key":"1612_CR11","doi-asserted-by":"crossref","unstructured":"Mimmo L, Harrison R, Hinchcliff R. Patient safety vulnerabilities for children with intellectual disability in hospital: a systematic review and narrative synthesis. BMJ paediatrics open. 2018; 2(1).","DOI":"10.1136\/bmjpo-2017-000201"},{"key":"1612_CR12","unstructured":"Equality Act. (2010). London. HMSO, 2010. http:\/\/www.legislation.gov.uk\/ukpga\/2010\/15\/contents. Accessed 08.10.20."},{"key":"1612_CR13","unstructured":"Mencap Death by indifference. Following up the treat me right report 2007 available online www.mencap.org.uk\/sites\/default\/files\/2016-06\/DBIreport.pdf. Accessed 01.12.20."},{"key":"1612_CR14","volume-title":"Healthcare for all: report of the independent inquiry into access to healthcare for people with learning disabilities","author":"J Michael","year":"2008","unstructured":"Michael J. Healthcare for all: report of the independent inquiry into access to healthcare for people with learning disabilities. London: Aldridge Press; 2008."},{"key":"1612_CR15","unstructured":"Kirkup B. (2020) The Life and Death of Elizabeth Dixon: A Catalyst for Change. Report of the Independent Investigation. https:\/\/assets.publishing.service.gov.uk\/government\/uploads\/system\/uploads\/attachment_data\/file\/938638\/The_life_and_death_of_Elizabeth_Dixon_a_catalyst_for_change_accessible.pdf Accessed 29.11.2020."},{"key":"1612_CR16","doi-asserted-by":"publisher","first-page":"13","DOI":"10.1163\/156916212X632943","volume":"43","author":"M Englander","year":"2012","unstructured":"Englander M. The interview: Data collection in descriptive phenomenological human scientific research. Journal of Phenomenological Psychology. 2012;43:13\u201335.","journal-title":"Journal of Phenomenological Psychology"},{"key":"1612_CR17","doi-asserted-by":"crossref","unstructured":"Ziebland S, Coulter A, Calabrese JD, Locock L, editors. Understanding and using health experiences: improving patient care. OUP Oxford; 2013.","DOI":"10.1093\/acprof:oso\/9780199665372.001.0001"},{"key":"1612_CR18","unstructured":"Moran-Ellis J, Alexander VD, Cronin A, Dickinson M, Fielding J, Sleney J, Thomas H. (2004). Following a Thread \u2013 An Approach to Integrating Multi-method Data Sets, paper given at ESRC Research Methods Programme, Methods Festival Conference, Oxford, July 2004."},{"key":"1612_CR19","unstructured":"Cronin A, Alexander V, Fielding J, Moran-Ellis J, Thomas H. The analytic integration of qualitative data sources. The Sage handbook of social research methods; 2008."},{"issue":"6","key":"1612_CR20","doi-asserted-by":"publisher","first-page":"349","DOI":"10.1093\/intqhc\/mzm042","volume":"19","author":"A Tong","year":"2007","unstructured":"Tong A, Sainsbury P, Craig J. Consolidated criteria for reporting qualitative research (COREQ): a 32-item checklist for interviews and focus groups. International journal for quality in health care. 2007;19(6):349\u201357.","journal-title":"International journal for quality in health care"},{"issue":"2","key":"1612_CR21","doi-asserted-by":"publisher","first-page":"77","DOI":"10.1191\/1478088706qp063oa","volume":"3","author":"V Braun","year":"2006","unstructured":"Braun V, Clarke V. Using thematic analysis in psychology. Qualitative research in psychology. 2006;3(2):77\u2013101.","journal-title":"Qualitative research in psychology"},{"issue":"4","key":"1612_CR22","doi-asserted-by":"publisher","first-page":"589","DOI":"10.1080\/2159676X.2019.1628806","volume":"11","author":"V Braun","year":"2019","unstructured":"Braun V, Clarke V. Reflecting on reflexive thematic analysis. Qualitative Research in Sport Exercise Health. 2019;11(4):589\u201397.","journal-title":"Qualitative Research in Sport Exercise Health"},{"issue":"1","key":"1612_CR23","doi-asserted-by":"publisher","first-page":"3","DOI":"10.1136\/bmjqs-2018-008216","volume":"28","author":"JK O\u2019Hara","year":"2019","unstructured":"O\u2019Hara JK, Aase K, Waring J. Scaffolding our systems? Patients and families \u2018reaching in\u2019 as a source of healthcare resilience. BMJ Qual Saf. 2019;28(1):3\u20136.","journal-title":"BMJ Qual Saf"},{"key":"1612_CR24","volume-title":"The measurement and monitoring of safety -drawing together academic evidence and practical experience to produce a framework for safety measurement and monitoring","author":"C Vincent","year":"2013","unstructured":"Vincent C, Burnett S, Carthey J. The measurement and monitoring of safety -drawing together academic evidence and practical experience to produce a framework for safety measurement and monitoring. London: Health Foundation; 2013."},{"key":"1612_CR25","volume-title":"Identifying risks and monitoring safety: the role of patients and citizens","author":"J O\u2019Hara","year":"2013","unstructured":"O\u2019Hara J, Isden R. Identifying risks and monitoring safety: the role of patients and citizens. London: The Health Foundation; 2013."},{"key":"1612_CR26","doi-asserted-by":"publisher","first-page":"236","DOI":"10.1016\/j.ijmedinf.2006.05.021","volume":"76","author":"KT Unruh","year":"2006","unstructured":"Unruh KT, Pratt W. Patients as actors: The patient\u2019s role in detecting, preventing and recovering from medical errors. Int J Med Inform. 2006;76:236\u201344.","journal-title":"Int J Med Inform"},{"issue":"1","key":"1612_CR27","doi-asserted-by":"publisher","first-page":"94","DOI":"10.1057\/s41285-017-0045-2","volume":"16","author":"R Duschinsky","year":"2018","unstructured":"Duschinsky R, Paddison C. The final arbiter of everything\u201d: a genealogy of concern with patient experience in Britain. Social Theory Health. 2018;16(1):94\u2013110.","journal-title":"Social Theory Health"},{"key":"1612_CR28","unstructured":"National Institute for Health and Care Excellence (NICE). Care and support of people growing older with learning disabilities NICE guideline [NG96] 2018 https:\/\/www.nice. org.uk\/guidance\/ng96\/ Accessed 08.12.20."},{"key":"1612_CR29","volume-title":"Intellectual disability and ill health: A review of the evidence","year":"2011","unstructured":"O\u2019Hara J, McCarthey,J., and Bouras H, editors. Intellectual disability and ill health: A review of the evidence. Cambridge: Cambridge University Press; 2011."},{"key":"1612_CR30","unstructured":"Emerson E, Baines S. (2010) Improving Health and Lives: Learning Disability Observatory https:\/\/www.improvinghealthandlives.org.uk\/uploads\/doc\/vid_7479_IHaL2010-3HealthInequality2010.pdf Accessed 08.12.20."},{"key":"1612_CR31","doi-asserted-by":"publisher","DOI":"10.1093\/med\/9780199533220.001.0001","volume-title":"Learning and intellectual disability nursing","author":"B Gates","year":"2009","unstructured":"Gates B, Barr O. Learning and intellectual disability nursing. Oxford: Oxford University Press; 2009."},{"issue":"2","key":"1612_CR32","doi-asserted-by":"publisher","first-page":"85","DOI":"10.1111\/j.1360-2322.2004.00184.x","volume":"17","author":"K Scior","year":"2004","unstructured":"Mason. J. and Scior K. Diagnostic overshadowing amongst clinicians working with people with intellectual disabilities in the UK. J Appl Res Intellect Disabil. 2004;17(2):85\u2013900.","journal-title":"J Appl Res Intellect Disabil"},{"key":"1612_CR33","doi-asserted-by":"publisher","first-page":"35","DOI":"10.7748\/ns.26.13.35.s49","volume":"26","author":"G Scott","year":"2012","unstructured":"Scott G. We need more learning disabilities specialists. Nursing Standard London. 2012;26:35.","journal-title":"Nursing Standard London"},{"key":"1612_CR34","doi-asserted-by":"crossref","unstructured":"Tuffrey-Wijne, I., Goulding, L., Giatras, N., Abraham, E., Gillard, S., White, S., ... Hollins, S. (2014). The barriers to and enablers of providing reasonably adjusted health services to people with intellectual disabilities in acute hospitals: evidence from a mixed-methods study. BMJ open, 4(4), e004606.","DOI":"10.1136\/bmjopen-2013-004606"},{"issue":"3","key":"1612_CR35","doi-asserted-by":"publisher","first-page":"243","DOI":"10.1111\/j.1468-3156.2010.00661.x","volume":"39","author":"E Mackey","year":"2011","unstructured":"Mackey E, Dodd K. Evaluation and effectiveness of pain recognition and management training for staff working in learning disability services. Br J Learn Disabil. 2011;39(3):243\u201351.","journal-title":"Br J Learn Disabil"},{"key":"1612_CR36","doi-asserted-by":"crossref","unstructured":"Hassiotis, A., Poppe, M., Strydom, A., Vickerstaff, V., Hall, I. S., Crabtree, J., ... Crawford, M. J. (2018). Clinical outcomes of staff training in positive behaviour support to reduce challenging behaviour in adults with intellectual disability: cluster randomised controlled trial. The British Journal of Psychiatry, 212(3), 161-168.","DOI":"10.1192\/bjp.2017.34"},{"key":"1612_CR37","doi-asserted-by":"crossref","unstructured":"Powell S, Jefferies R. (2019). Development of training programme to manage behaviour that challenges in children and young people with learning disabilities. Learning Disability Practice, 22(6).","DOI":"10.7748\/ldp.2019.e2000"},{"issue":"4","key":"1612_CR38","doi-asserted-by":"publisher","first-page":"28","DOI":"10.1108\/13595474200800036","volume":"13","author":"J Michael","year":"2008","unstructured":"Michael J, Richardson A. \u201cHealthcare for All: The Independent Inquiry into Access to Healthcare for People with Learning Disabilities\u201d. Tizard Learning Disability Review. 2008;13 No(4):28\u201334.","journal-title":"Tizard Learning Disability Review"},{"key":"1612_CR39","unstructured":"Public Health England. (2020) COVID-19: deaths of people with learning disabilities https:\/\/assets.publishing.service.gov.uk\/government\/uploads\/system\/uploads\/attachment_data\/file\/933612\/COVID-19__learning_disabilities_mortality_report.pdf Accessed Jan 2021."},{"issue":"9","key":"1612_CR40","doi-asserted-by":"publisher","first-page":"787","DOI":"10.1111\/j.1365-2788.2009.01192.x","volume":"53","author":"L Gale","year":"2009","unstructured":"Gale L, Naqvi H, Russ L. Asthma, smoking and BMI in adults with intellectual disabilities: a community-based survey. J Intellect Disabil Res. 2009;53(9):787\u201396.","journal-title":"J Intellect Disabil Res"},{"key":"1612_CR41","first-page":"64","volume":"57","author":"JMJAA Straetmans","year":"2007","unstructured":"Straetmans JMJAA, van S Lantman-de Valk, Schellevis HMJ, Dinant FG. G-J. Health problems of people with intellectual disabilities: the impact for general practice. Br J Gen Pract. 2007;57:64\u20136.","journal-title":"Br J Gen Pract"},{"issue":"1","key":"1612_CR42","doi-asserted-by":"publisher","first-page":"1","DOI":"10.1186\/s12939-016-0296-x","volume":"15","author":"E Emerson","year":"2016","unstructured":"Emerson E, Hatton C, Baines S, Robertson J. The physical health of British adults with intellectual disability: cross sectional study. Int J Equity Health. 2016;15(1):1\u20139.","journal-title":"Int J Equity Health"},{"key":"1612_CR43","doi-asserted-by":"publisher","first-page":"130","DOI":"10.1016\/j.puhe.2008.10.020","volume":"123","author":"E Emerson","year":"2009","unstructured":"Emerson E. Overweight and obesity in 3 and 5 Year old children with and without developmental delay. Public Health. 2009;123:130\u201333.","journal-title":"Public Health"},{"issue":"3","key":"1612_CR44","doi-asserted-by":"publisher","first-page":"298","DOI":"10.1111\/j.1468-3148.2008.00462.x","volume":"22","author":"CA Melville","year":"2009","unstructured":"Melville CA, Hamilton S, Miller S, Boyle S, Robinson N, Pert C, Hankey CR. Carer knowledge and perceptions of healthy lifestyles for adults with intellectual disabilities. J Appl Res Intellect Disabil. 2009;22(3):298\u2013306.","journal-title":"J Appl Res Intellect Disabil"},{"issue":"6","key":"1612_CR45","doi-asserted-by":"publisher","first-page":"469","DOI":"10.1016\/S0891-4222(00)00053-6","volume":"21","author":"J Robertson","year":"2000","unstructured":"Robertson J, Emerson E, Gregory N, Hatton C, Turner S, Kessissoglou S, Hallam A. Lifestyle related risk factors for poor health in residential settings for people with intellectual disabilities. Res Dev Disabil. 2000;21(6):469\u201386.","journal-title":"Res Dev Disabil"},{"key":"1612_CR46","doi-asserted-by":"crossref","unstructured":"Fylan B, Marques I, Ismail H, Breen L, Gardner P, Armitage G, Blenkinsopp A. Gaps, traps, bridges and props: a mixed-methods study of resilience in the medicines management system for patients with heart failure at hospital discharge. BMJ open. 2019;9(2):e023440.","DOI":"10.1136\/bmjopen-2018-023440"}],"container-title":["International Journal for Equity in Health"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/link.springer.com\/content\/pdf\/10.1186\/s12939-021-01612-1.pdf","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/link.springer.com\/article\/10.1186\/s12939-021-01612-1\/fulltext.html","content-type":"text\/html","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/link.springer.com\/content\/pdf\/10.1186\/s12939-021-01612-1.pdf","content-type":"application\/pdf","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2022,1,28]],"date-time":"2022-01-28T05:10:15Z","timestamp":1643346615000},"score":1,"resource":{"primary":{"URL":"https:\/\/equityhealthj.biomedcentral.com\/articles\/10.1186\/s12939-021-01612-1"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2022,1,28]]},"references-count":46,"journal-issue":{"issue":"1","published-print":{"date-parts":[[2022,12]]}},"alternative-id":["1612"],"URL":"https:\/\/doi.org\/10.1186\/s12939-021-01612-1","relation":{"has-preprint":[{"id-type":"doi","id":"10.21203\/rs.3.rs-806118\/v1","asserted-by":"object"}]},"ISSN":["1475-9276"],"issn-type":[{"value":"1475-9276","type":"electronic"}],"subject":[],"published":{"date-parts":[[2022,1,28]]},"assertion":[{"value":"13 August 2021","order":1,"name":"received","label":"Received","group":{"name":"ArticleHistory","label":"Article History"}},{"value":"18 December 2021","order":2,"name":"accepted","label":"Accepted","group":{"name":"ArticleHistory","label":"Article History"}},{"value":"28 January 2022","order":3,"name":"first_online","label":"First Online","group":{"name":"ArticleHistory","label":"Article History"}},{"order":1,"name":"Ethics","group":{"name":"EthicsHeading","label":"Declarations"}},{"value":"All focus group participants provided informed consent to participate. Favourable ethical opinion to conduct this study was given by The University of Leeds School of Medicine Research Ethics Committee (SoMREC) (Ref: MREC18-105).","order":2,"name":"Ethics","group":{"name":"EthicsHeading","label":"Ethics approval and consent to participate"}},{"value":"Not applicable.","order":3,"name":"Ethics","group":{"name":"EthicsHeading","label":"Consent for publication"}},{"value":"The authors declare that they have no competing interests.","order":4,"name":"Ethics","group":{"name":"EthicsHeading","label":"Competing interests"}}],"article-number":"13"}}