Last week I spent 48 hours holed up in a remote hotel with 24 top researchers, clinicians, specialist cystic fibrosis (CF) nurses, clinical psychologists, behavioural insight experts and CF community representatives; and not once did they tell me to do my physio!
I was a strange child – never wanting to be a famous pop star, instead I imagined notoriety being reached through being a famous research scientist who cured diseases. It was particularly exciting therefore to be asked to attend the Trust’s adolescent sandpit.
The innovative event drew together 25 experts from across the CF disciplines, and from as far afield as the United States; throwing together an eclectic mix of disciplines and asking them to leave their usual roles at the door. I was there to remind everyone of the patients in their clinics; the worries that may not be expressed; how much nebulising tobramycin tastes like paint stripper, and that people with cystic fibrosis have no more hours in the day than anyone else.
Challenges facing the participants included why treatment adherence drops off at adolescence and how to address this; how to accurately measure progress in changing bodies and the right kinds of support to offer patients and their families at this already challenging age.
Being a part of the event was a privilege. There was a constant buzz in the room as animated debates were held; coffee-fuelled discussions continued into the evening, and individuals were able to take a step back from the daily grind to take a fresh look at the issues at hand. Hopefully those 48 hours will have given time for the seeds of ideas to begin to germinate, and grow into something which will push back the decline in the health of those with cystic fibrosis, and stop adolescents having to worry about their futures.