title: The challenges in monitoring and preventing patient safety incidents for people with intellectual disabilities in NHS acute hospitals: evidence from a mixed-methods study.
abstract: BACKGROUND
  There has been evidence in recent years that people with intellectual disabilities in acute hospitals are at risk of preventable deterioration due to failures of the healthcare services to implement the reasonable adjustments they need. The aim of this paper is to explore the challenges in monitoring and preventing patient safety incidents involving people with intellectual disabilities, to describe patient safety issues faced by patients with intellectual disabilities in NHS acute hospitals, and investigate underlying contributory factors.
  
  
  METHODS
  This was a 21-month mixed-method study involving interviews, questionnaires, observation and monitoring of incident reports to assess the implementation of recommendations designed to improve care provided for patients with intellectual disabilities and explore the factors that compromise or promote patient safety. Six acute NHS Trusts in England took part. Data collection included: questionnaires to clinical hospital staff (n = 990); questionnaires to carers (n = 88); interviews with: hospital staff including senior managers, nurses and doctors (n = 68) and carers (n = 37); observation of in-patients with intellectual disabilities (n = 8); monitoring of incident reports (n = 272) and complaints involving people with intellectual disabilities.
  
  
  RESULTS
  Staff did not always readily identify patient safety issues or report them. Incident reports focused mostly around events causing immediate or potential physical harm, such as falls. Hospitals lacked effective systems for identifying patients with intellectual disabilities within their service, making monitoring safety incidents for this group difficult.The safety issues described by the participants were mostly related to delays and omissions of care, in particular: inadequate provision of basic nursing care, misdiagnosis, delayed investigations and treatment, and non-treatment decisions and Do Not Attempt Cardiopulmonary Resuscitation (DNACPR) orders.
  
  
  CONCLUSIONS
  The events leading to avoidable harm for patients with intellectual disabilities are not always recognised as safety incidents, and may be difficult to attribute as causal to the harm suffered. Acts of omission (failure to give care) are more difficult to recognise, capture and monitor than acts of commission (giving the wrong care). In order to improve patient safety for this group, the reasonable adjustments needed by individual patients should be identified, documented and monitored.
authors.affiliation: Faculty of Health, Social Care and Education, St, George's University of London and Kingston University, 2nd floor Grosvenor Wing, Cranmer Terrace, London SW17 0RE, UK. I.Tuffrey-Wijne@sgul.kingston.ac.uk.
authors.forename: Irene
authors.initials: I
authors.lastname: Tuffrey-Wijne
authors.forename: Lucy
authors.initials: L
authors.lastname: Goulding
authors.forename: Vanessa
authors.initials: V
authors.lastname: Gordon
authors.forename: Elisabeth
authors.initials: E
authors.lastname: Abraham
authors.forename: Nikoletta
authors.initials: N
authors.lastname: Giatras
authors.forename: Christine
authors.initials: C
authors.lastname: Edwards
authors.forename: Steve
authors.initials: S
authors.lastname: Gillard
authors.forename: Sheila
authors.initials: S
authors.lastname: Hollins
mesh_terms: D000328:Adult; D003625:Data Collection; D004739:England / Q000453:epidemiology; D005260:Female; D006801:Humans; D007297:Inpatients; D008607:Intellectual Disability; D008297:Male; D061214:Patient Safety; D017751:Safety Management; D013222:State Medicine; D014947:Wounds and Injuries / Q000453:epidemiology* / Q000517:prevention & control*