This is an accessible transcript for the video 'Patient perspective: NIHR facilitates patient input into Servier’s first Sjögren’s Syndrome trial'
Text on screen: The NIHR facilitates Servier’s first Sjogren’s Syndrome trial
Text on screen: Carol, who suffers from Sjogren’s Syndrome, attended an NIHR and Servier patient engagement session with her husband, Ken.
Carol: Sjogren's has been an absolute blight on my life as I've been getting older. I've found it really quite difficult to come to terms with.
Text on screen: We interviewed Ken and Carol about their experience at Servier’s patient engagement session
Ken: We were asked what we thought of the various steps they were proposing to take so we came away with a lot more, well, we went with nothing and we came back with a plan.
Text on screen: Feedback from the session impacted the trial design
Ken: It was an interesting meeting in as much as you get quite an in-depth discussion going from people who have the condition and because it's in a safe environment you'll learn things that you perhaps wouldn't otherwise. As they were going through the procedures, they mentioned that they wanted to do lip biopsy.
Carol: Oh, God yes.
Ken: Now, there was an overwhelming feeling against that, so there's always something that you can learn about this.
Text on screen: Patients also got a lot out of the engagement sessions
Carol: And also to sort of be aware of the fact that you're not on your own in this, that there are all these other people who also have Sjogren's.
Ken: It's probably too late for us now to be involved in any major discovery, that's for the next generations. As we've seen, people in the generations beneath us are suffering in just the same way, and it would be great if there was some sort of a breakthrough that would help them avoid the position we're in. There is a growing awareness of it now and it really is good to get some publicity out about it so that other people who may have it but not know what it is and not know what to do about it can be directed towards help because it really is a condition that takes over people's lives. It's really debilitating.
Text on screen: NIHR. For more information visit: www.nihr.ac.uk