Project summary
Using interviews and information technology, patients with learning disabilities were supported to share their experiences of acute healthcare.
Project Dates
Start Date: 19/01/2009
End Date: 19/03/2009
Area of healthcare
Specialist care
Target groups
People with disabilities
Guidelines followed
A range of references were used to identify the issues around people with learning disabilities accessing general health services, including:
* NHS Quality Improvement Scotland (2005) “It’s Our Health Service – Improving the Health of People with Learning Disabilities – a guide for NHS Services, their partners and advocacy groups”
* NHS Health Scotland (2004) “Health Needs Assessment Report Summary: people with learning disabilities in Scotland”
Approaches used
Surveys, Interviews, Person-centred planning, Story Dialogue and story gathering, Information Technology
Aims and objectives
The aim of this project was to identify a small number of people with learning disabilities who had accessed acute healthcare in Fife within the past three years and support them to describe their experiences, from the identification of the health problem to the conclusion of treatment, using a simple visual format and their own words wherever possible.
The experiences were fed back to the Learning Disability Management Team in the form of a written report and presentation of the stories.
What we did
Four patients with learning disabilities were identified who were willing to share their stories and able to give consent to having their voices recorded.
The patients were interviewed and their experiences recorded on a flip chart. An accessible PowerPoint presentation of their story was then created, using simple language and including images and symbols. The patients were interviewed a second time, using the PowerPoint as an aide memoir, and their voices were recorded. This audio was added to the PowerPoint as a soundtrack and the final presentations will be shown to the Learning Disability Management Team and the NHS QIS Peer Review Team.
Fully engaging with patients and empowering them to become more involved in planning, delivering and evaluating their care can lead to an improved understanding of the experiences of people with learning disabilities when accessing acute healthcare.
Training undertaken
NHS Fife Clinical Governance provided support in terms of project planning, design and implementation.
Evaluation
The simplicity of the approach, and the process of refining it into a simple template for presenting stories back to patients and then recording their comments, has proved to be a valuable tool for ensuring that patients in Fife are empowered to comment on the care they receive.
Patients, staff and managers have generally agreed that, with refinement, this process could become part of a routine mechanism for patient focus and public involvement work.
The overall feedback was positive, not only about the process but also about the experience of being involved in this type of work. All four patients reported that they thought that this was a good way of telling their stories and two said they would do this type of thing again.
Plans for the future
To date, this approach has also been used as part of the patient involvement work for the commissioning of a new regional learning disability facility and the development of a positive engagement strategy for existing patients within the in-patient service.