Participant experience of Project Nightingale

Recently we had one of our participants, Peter Stanley, kindly come in to talk about his experiences using Project Nightingale.

Peter was first diagnosed with Ankylosing Spondylitis (AS) around the age of 40, whereby he initially did not know much about the condition, other than that he needed to see a consultant every year. In these early years, he did not think it would affect him too much, and as such, did not do any exercises to self-manage his AS.

As time went on, approximately 10-12 years following diagnosis, Peter began experiencing pain and was advised to join a NASS group. However, even with the NASS group, Peter found that he was only doing the stretches, exercises and hydrotherapy once per week, during the NASS group.

Over the years, Peter found that these movements during the NASS group were becoming more difficult. He sought help from his doctor and was referred to Bath for a 2-week residential course for axial spondyloarthritis (axSpA) at the Royal National Hospital for Rheumatic Diseases; whereby, during the course, participants gain further education regarding their condition, and develop tools and techniques to help manage symptoms – for example exercises that can be carried out regularly to maintain posture and mobility.

It was during this course, over a year ago, that Peter was first introduced to Project Nightingale. Peter discusses how following the course, Project Nightingale has helped him maintain the motivation to carry out these daily exercises and develop a routine to manage his axSpA during daily life. Peter also explains how Project Nightingale has helped him understand some of his most problematic symptoms, and allowed him to implement changes in his daily life to reduce these symptoms. While also acting as a useful record for when attending visits with his Rheumatologist.

Below is the full 23-minute video of Peter talking about his experiences. We have also created a 10-minute highlights video, in addition to a 2-minute clip outlining some of the benefits Peter has experienced while using Project Nightingale.

Thank you so much Peter for being such a proactive member of the Project Nightingale community! We are so happy to hear about your success and look forward to catching up with you again soon.

If you too would like to share your experience with the app or of living with axSpA in a Project Nightingale blog post, please get in contact with myself Rosie, a research assistant at the RNHRD and University of Bath at rlb60@bath.ac.uk or rosie.barnett1@nhs.net.

Thank you for reading – we hope that you find Peter’s story helpful. Have a great rest of the week everyone!