Following the publication of Mencap’s Death by Indifference report in 2007 and the report of the independent enquiry into healthcare for people with learning disabilities (LD) in 2008, most people acknowledged that hospitals had failed to meet the healthcare needs of patients with LD. Much has been done over the past five years to address this unfortunate situation (Hatton et al., 2011; Turner and Robinson, 2011): many hospitals now have special LD policies and care pathways; offer staff training; and ensure that information systems “flag” the presence of patients with an LD, amongst other measures. Despite this, recent reports by Mencap (2012) and the Health Services Ombudsman (2013) highlight significant and avoidable care failings that continue to occur on a regular basis. In this context, understanding how these policies and interventions are implemented in practice, and why they may (or may not) be working, is essential.
To benefit patients with LD by investigating whether these initiatives are leading to discernible and meaningful improvements and, if so, how, in order to provide those actively campaigning on behalf of patients with LD with such evidence.
Focused on two acute hospital trusts (CUHFT and ENHT) in the East of England, we will:
1. Statistically analyse routinely collected data from both participating trusts, in order to compare the health problems, hospital stays, and outcomes of patients with learning disabilities to those without learning disabilities;
2.Use hospital records to map the care and treatment of patients with LD, 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 whose LD was “flagged” from the start of admission compare to those whose LD was not “flagged” at admission.
3. Conduct interviews with patients who have learning disabilities, their carers / support staff, and the hospital staff who took care of these people while they were in hospital. This should help us understand what type of adjustments to care and treatment are being made, and what different people think to be appropriate and reasonable.
The research will help us understand the care and support that adults with LD currently receive as hospital in-patients, and in what ways this is appropriate for their needs (or not). By focusing on patient, carer/support worker and healthcare provider perspectives and experiences, and understanding hospital admissions from these multiple perspectives, we seek to make meaningful, implementable recommendations for improvements to care planning and provision. By disseminating our findings widely, we will be able to help other doctors, nurses, hospital managers and service planners understand how they can, and why they should: (a) improve the care that they provide for their adult patients with LD, and (b) offer appropriate support to the carers/support workers and frontline hospital staff, who often collaborate to provide care in difficult circumstances.
Principal Investigator: Dr Marcus Redley
Phone: 01223 746191
Post: Cambridge Intellectual & Developmental Disabilities Research Group,Department of Psychiatry, University of Cambridge, Douglas House, 18b Trumpington Road, Cambridge, CB2 8AH.