Patients are using their personal experience of living with debilitating conditions to help shape the hospital services they use.
Working with the Clinical Health Psychology team at Salford Royal, patients who are under various medical services including renal, gastro, Chronic Fatigue Syndrome (CFS) and dermatology, are sharing their experiences of using health-related psychology services to shape improvements for others going through the same.
Many patients undergoing treatment for medical conditions, will also experience issues around psychological wellbeing and will be referred to the Department of Clinical Health Psychology for psychological support.
Now a team of nearly 20 ‘expert by experience’ patients are working with Dr Amy Waugh, Clinical Psychologist, Dr Jessica Dean, Consultant Clinical Psychologist and Helen Ullmer, CBT Therapist to help ensure services continue to be designed with the patient at the centre.
Amy said: “It’s been a really positive experience; our clinicians have found it really helpful to hear the patient perspectives and the patients appreciate having their viewpoint valued.
“Patients have told us how beneficial it has been to use what has been a very difficult period in their lives to give something back or use that experience to improve a service for others going through something similar.”
Expert by experience patients have been involved in various projects since the group launched in 2018 including reviewing wellbeing apps, contributing their personal stories to clinical meetings to reflect on patient experience and even playing an active role in recruiting new members of staff to the service teams.
Jessica said: “If we don’t listen to what patients tell us then we will struggle to provide a service that is accessible, efficient and effective.
“When a patient accesses a service there are things that we don’t necessarily understand as clinicians because we aren’t living with that illness or the mental health challenges that accompany it.
“Many of our patients were shielding during the COVID pandemic so, to understand better how to make patients to feel confident about returning to the hospital and face to face appointments, we ran a focus group involving our experts. As a result, we gained valuable information and insight about small changes we could make to increase confidence in our patients and provide reassurance to those attending the department in person. Many of these changes would not have been immediately obvious to us as clinicians so the patient perspective was hugely valuable.”
Expert by experience patients have also helped influence the format of waiting list triage calls and have inputted ideas around the written communications patients receive from the service.
Jessica added: “Many of our patients have spent a significant amount of time in and out of hospital settings and ill health often takes away a sense of control in their life. To have the opportunity to be part of the decision-making process around their care and to influence how a service is provided makes them feel that they have more control over something that previously made them feel helpless.
“We need to keep thinking about how we ensure our services are accessible and effective for all, now and in the future. The expert by experience patient group is key in helping us to achieve this.”