TABLE 4.
Quote number | Illustrative quote |
---|---|
How much administrative and clinical time does pES add? | |
Q1 | “I cannot tell you how pressurising that is because really to see somebody, to scan them, to counsel them about what you’ve found, to talk through options, to do an invasive test, to talk through the options of the analysis of the sample and to do that in a genuinely informed way, not rushing people, probably even with a bright couple who kind of know what they want to do from the word off, you’re talking at least an hour/hour and 20 minutes. If you’re doing it via an interpreter and you’re adding in all the forms that are required for R21, you’re talking about at least 2 hours’ work and, even then, you feel like you’ve rushed people.” - Professional 25, FM Consultant |
Q2 | “Yesterday it took me 25 min to see a couple–it took me another half an hour to complete the forms - I had to fill in three records of discussion, the request form and then the blood forms–seven forms–it took me just as long to fill in the forms as to see the couple.” - Professional 53, Clinical geneticist |
Q3 | “If I was actually doing the consenting, that would add a bit of time to patients that I was seeing. But I think that, I don’t think it’s a huge burden adding an exome.” - Professional 56, FM Consultant |
Q4 | “When the service first started we did the appointments jointly with the genetic counsellor which was amazing and then they just said “We can’t do it anymore because we’re too busy.I think it’s massively helpful to have a genetic counsellor to join those appointments.so at the moment no one’s helping me do any of it.” - Professional 39, Clinical geneticist |