Title: Characterising the experiences of men and women with learning disabilities following inpatient admission to general hospital
Funder: Department of Health (England)

Abstract: Background Following the publication of Death by Indifference (1) and the public inquiry into healthcare for men and women with learning disabilities (LD)(7), hospitals have done much to improve healthcare for this vulnerable population, although serious failings continue to occur on a regular basis(10–12). Many general hospitals now have special LD policies and care pathways; hold training events in relevant legislation; ensure that information systems “flag” the presence of patients with LD; and have introduced Hospital Passports and Carers’ Agreements. These initiatives will, in most hospitals, be overseen and championed by a Learning Disability Liaison Service (LDLS). The long-term development and financial support of these initiatives, if they are not to degrade into ‘tick-box’ exercises(13), is at least partly dependent upon evidence, including that in peer-reviewed research. This evidence will document, alongside measurable improvements to this population’s care and treatment, the ways in which these initiatives are understood and implemented. Aim To benefit patients with LD by investigating whether these initiatives are leading to discernible and meaningful improvements, and to provide those actively campaigning on their behalf – both within and outside of the NHS – with such evidence. Plan of Investigation Focused on two general hospitals in the East of England, we will: Benchmark the hospital use and outcomes of patients with LD against patients with no such disability, using routinely collected hospital data. This will give healthcare practitioners a better understanding of this patient population (number and type of admissions, health conditions, health service use) and their standing relative to their non-disabled peers. This is an important first step towards developing the robust indicators necessary to measure and monitor LD patient outcomes, which are currently lacking(14). Describe and map the care and treatment of patients with learning disabilities, in order to discern (i) whether appropriate adjustments are being made; (ii) which aspects of a patient’s journey through hospital could be improved, and (iii) how the journeys of patients who, from the start of their admission, were “flagged” as having an LD compare to those whose LD was not “flagged”. This latter group of patients are at an increased risk of being treated less favourably than their “flagged” peers. A specially-developed Journey Mapping Schedule (see Appendix 2) has been designed to extract information from electronic and paper medical records and other relevant documents, in order to describe each patient’s socio-demographics, their trajectory through hospital, and whether their (dis)abilities and/or special needs were recognised and appropriately accommodated. Investigate which adjustments to the provision of care and treatment for patients with LD are considered 'reasonable' - under the Equality Act - in order to ensure equality with non-disabled patients. Qualitative interviews with individuals with LD, their supporters (both family carers and direct support professionals (DSPs)), and healthcare practitioners will be analysed using the ‘twin-track’ approach described by Silverman(5). This approach recognises that the significance of interview data lies not only in what respondents report as having occurred, but also in how respondents’ reports display their moral evaluations of events, actions and persons. Such a focus is particularly appropriate for understanding what is considered reasonable, or otherwise, about a 'reasonable adjustment'. Benefits to patients and the NHS Many people with an LD rely upon assistance to access healthcare(2); they are also largely reliant upon others championing initiatives that recognise and accommodate their disability-related needs. Self-advocates, NGOs, families, DSPs and healthcare practitioners who champion these initiatives to promote equity with non-disabled patients, need evidence of whether or not they are meaningfully understood and applied appropriately. At present, there is a noticeable absence of recent, relevant evidence.


Research activity codes: 8.1 ORGANISATION AND DELIVERY OF SERVICES
Health categories: MENTAL HEALTH