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dc.contributor.authorMercer, Joan
dc.contributor.authorDowling, Sara
dc.contributor.authorCarpenter, Emma
dc.contributor.authorMcGahey, Marie
dc.contributor.authorCutajar, Peter
dc.identifier.citationMercer, J., Dowling, S., Carpenter, E., McGahey, M., Del Toro, G. & Cutajar, P. (2019). Improving end of life care for people with intellectual and developmental disabilities. In: Hastings, R., (Ed.) World Congress of the International Association for the Scientific Study of Intellectual and Developmental Disabilities 2019, 6-9 August 2019 Glasgow, Scotland. Journal of Intellectual Disability Research, p.811-812.en
dc.description.abstractIntroduction: Nottinghamshire Healthcare NHS Foundation Trust (NHCFT) undertook a local evaluation study, highlighting inequalities in identifying needs and delivering high quality end of life care for people with an intellectual and developmental disability (IDD). The objective was to ensure that when patients with an IDD are identified as having palliative care needs their care preferences and needs are discussed with the individual, recorded and information shared. <br/>Method(s): The team used the Patient and Family Centred Care methodology (Point of Care Foundation 2017), Experience based co design process and Process Mapping event. Patient shadowing was undertaken by NHCFT staff. These findings were reflected upon using appreciative inquiry. The change programme required a predominantly qualitative improvement approach and the Plan Do Study Act (PDSA) methodology was adopted supporting and facilitating improvement. <br/>Result(s): The process highlighted: Improved understanding of staff's roles and responsibilities; Staff training needs; and Methods to improve wider multi-disciplinary team working. Implications: The team learnt from patient experiences making immediate improvements to care. Including improved communication and coordination of care, reduced duplication of care and improved utilisation of resources. Additionally development of an end of life care toolkit supportIng staff identify early people who require care, enables personalised care planning and maximises patients comfort and wellbeing.en
dc.subjectTerminal careen
dc.subjectPalliative careen
dc.subjectIntellectual disabilityen
dc.subjectDevelopmental disabilitiesen
dc.titleImproving end of life care for people with intellectual and developmental disabilitiesen

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