Research Background (Easier to Read):
Thanks to published reports over the last 10 years, such as Mencap’s Death by Indifference (2007) and the independent inquiry into healthcare for people with learning disabilities (2008), we know that hospitals have struggled to provide quality care for people with learning disabilities.
More recently, many hospitals have tried to remedy the situation by introducing new schemes for treating people with learning disabilities, such as:
- special learning disability pathways
- staff training on how to treat people with learning disabilities
- offering “reasonable adjustments” to care
- computer “flags” which tell hospitals whether a patient has a learning disability, so that they can make “reasonable adjustments”
Unfortunately, reports by Mencap (2012) and the Confidential Inquiry into Premature Deaths of People with Learning Disabilities (CIPOLD 2013) have continued to find serious problems which could have been avoided. Because of this, we believe that it is important to understand how these new practices are being used, and why they may, or may not work.
Our research aims to benefit patients with learning disabilities by looking to see if new hospital practices are actually improving healthcare. We would also like to know why some things work and some do not.
This project began on the 1st October 2014 and will run until early 2017.
Our research will:
- Compare the health problems, hospital stays, and outcomes of patients with learning disabilities to those without learning disabilities;
- Use hospital records to map the treatment received by patients with learning disabilities during hospital; and,
- Interview (talk to) 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 Team: Who are we?
Our research team consists of researchers, clinicians, and social care experts. This is a collaborative study, involving academics and practitioners located at various sites across the East of England:
Principal Investigator & Senior Research Associate
(University of Cambridge)
Patient and Public Involvement Lead & Consultant Clinical and Forensic Psychologist
(University of Cambridge)
Research Assistant
(Herts)
Other grant holders and members of our team are: Professor Anthony Holland (University of Cambridge); Mrs Sara Jones, Mrs Karen Thomson and Dr John Bradley (Cambridge University Hospitals NHS Foundation Trust); Mrs Bernadette Herbert, Mrs Anita Holme and Mrs Angela Thompson (East and North Hertfordshire NHS Trust); Mrs Adefunke Eriolou (Hertfordshire County Council and Hertfordshire Partnership Foundation Trust); Mr John Ellis (The Edmund Trust); and Dr Gyles Glover (Public Health England). Our statistical advisors are: Dr Adam Wagner (University of Cambridge) and Dr Peter Watson (MRC-CBU).
Patient & Public Involvement (PPI): Working with People with Learning Disabilities and their Caregivers on Running the Project
We think that it’s really important to involve people with learning disabilities and their carers or support workers in this project, not just as research participants, but also as Expert Advisors who can work with us on managing how the project is run. An Expert Advisor is someone who knows what it’s like to have a learning disability, that’s why we have recruited self-advocates with learning disabilities and caregivers to join our Expert Advisor Groups.
During the Expert Advisor meetings we ask Advisors to talk about the research and try to encourage them to draw on their own thoughts and experiences of hospital admissions (to the extent that they feel comfortable in doing so). Expert Advisors are an essential part of this project, and we are all looking forward to meeting regularly!
We held our first Expert Advisor meeting in April 2015 in Hertfordshire, and this was a great success! We got some brilliant feedback about how the research should be delivered to people with learning disabilities, as well as numerous first-hand accounts of what healthcare in acute NHS hospitals is actually like for people with learning disabilities.
By the close of 2015 we had held a further 2 Expert Advisor meetings. Once again these were rousing successes. By encouraging Expert Advisors to explore their experiences of supporting patients with learning disabilities in acute NHS hospitals we have been able to develop a set of interview questions that are grounded in real-world accounts of the very area we wish to investigate. We plan to begin our interviews in the spring of 2016.