HEaLeD: Hospital Experiences of Adults with Learning Disabilities
Type of research
Mixed quantitative and qualitative methods
Background and scientific rationale
The HEALeD study uses mixed quantitative and qualitative methods to characterise the experiences of adults with learning disabilities (LD), their caregivers, and the healthcare workers who look after them in acute general hospital during inpatient admissions. This study involves partners from two acute NHS hospital trusts: Cambridge University Hospitals NHS Foundation Trust (CUHFT) in Cambridgeshire and East & North Hertfordshire NHS Trust (ENHT) in Hertfordshire. Collaborators from the Hertfordshire Health Liaison Team (HLT), which supports individuals with LD and their caregivers in community (primary) and acute hospital (secondary) care settings across Hertfordshire, as well as the Edmund Trust, a social care organisation based in Cambridgeshire, are also involved. The project builds on a pilot research collaboration involving the same collaborators, who worked together to design the HEALeD project’s methods and wrote a successful application for funding from the NIHR Research for Patient Benefit (RfPB) Programme. These collaborators are based in organisations which span: academia (University of Cambridge), the NIHR CLAHRC, a local NHS Trust (CPFT); two acute NHS hospitals (CUHFT and ENHT); community NHS health and Local Authority social care (Hertfordshire HLT; and third sector social care (The Edmund Trust). The project was carried out three separate, but interconnected Work Packages, described in the Methodology section.
Following the publication of Death by Indifference (Mencap 2007) and the public inquiry into healthcare for men and women with learning disabilities (LD) (Michael 2008), hospitals have done much to improve healthcare for this vulnerable population, although serious failings continue to occur on a regular basis (Mencap 2012). 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, is at least partly dependent upon evidence, including that in peer-reviewed research, which documents the ways in which initiatives are understood and implemented, alongside measurable improvements to this population’s care and treatment.
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.
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: benchmark the hospital use and outcomes of patients with learning disabilities (LD) against patients with no such disability. 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.
2) 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”, as they are at an increased risk of being treated less favourably than their “flagged” peers. A specially-developed Journey Mapping Schedule (see Appendix 4 of Project Protocol) will be used 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.
3) Investigate which adjustments to the provision of care and treatment received by patients with LD are considered reasonable and appropriate in order to ensure equality with non-disabled patients. Qualitative interviews with individuals with LD, their supporters (both family carers and paid support workers (PSWs)), and healthcare practitioners will be analysed using the ‘twin-track’ approach described by Silverman. 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’.
EDD-18: HEaLeD: Hospital Experiences of Adults with Learning Disabilities Dr Marcus Redley (Principal Investigator, NIHR CLAHRC East of England & Dept of Psychiatry, Univ. of Cambridge); Dr Isabel Clare (NIHR CLAHRC East of England; CPFT, and Department of Psychiatry, Unversity of Cambridge); Prof Tony Holland (NIHR CLAHRC EoE; Dept. of Psychiatry, University of Cambridge); Dr Adam Wagner (NIHR CLAHRC EoE, University of East Anglia) with Research Assistants: Ms Isabella Lancaster, Ms Cristina Perez, Mr Adam Pitt.
External collaborators: Dr John Bradley (Cambridge University Hospitals NHS Foundation Trust); Mr Frank Garvey (Hertfordshire Health Liaison Team; retired and replaced by Ms Adefunke Eriolou ); Dr Gyles Glover (Public Health England, Co-Director of the Learning Disabilities Team); Mrs Bernadette Herbert (East and North Hertfordshire NHS Trust); Mrs Lyn Jenkins (The Edmund Trust; retired in 2016 and replace by Mr John Ellis); Mrs Sara Jones (Cambridge University Hospitals NHS Foundation Trust); Mrs Angela Thompson (East and North Hertfordshire NHS Trust); Mrs Karen Thomson (Cambridge University Hospitals NHS Foundation Trust); Dr Peter Watson (MRC Cognition and Brain Sciences Unit)