Thanks to CF Channel Islands I recently attended my first Cystic Fibrosis Conference. I am a mum to a daughter with CF and a Social Worker for young adults with physical and or sensory disabilities. Ironically I would be my own daughter’s social worker and having worked in the past with CF patients and her having a late diagnosis aged 16 (3 years ago), this has all been a steep learning curve and emotional roller coaster.
However the conference highlighted lots of interesting information but also some concerning issues.
The good is the potential of new medications, trials (www.cysticfibrosis.org.uk/clinicaltrials) and research that goes on and the commitment from the Speakers was never in doubt. Having met Keith Brownlee at Les Cotils last year, it was again evident from his session how knowledgeable and passionate he is about improving outcomes for those living with CF. I would encourage everyone to look at the links at www.cysticfibrosis.org.uk/ukcfc to see for them selves. It was very interesting to hear how improving outcomes creates problems for services as people live longer the numbers of patients with CF increases. There are 27 clinics in the UK which when divided into the number of CF patients means they are seeing 250 people each. As the CF community is growing at about 200 a year due to births and new late diagnosis’s it is easy to see the CF community will soon outgrow the resources available so investment is needed in new approaches to monitoring the condition.
There was discussion about virtual clinics and remote monitoring and given the concerning issues is something that I hope comes to fruition soon.
The talk of cross infection was the concerning bit for me and watching the video of the session that we weren’t allowed to see i.e. the clinician’s sessions on Monday the 10th, I don’t want my daughter to attend a CF clinic again!!!
The most serious bugs are pretty mobile and active for up to 24 hours so cleanliness is paramount in the hospital clinic rooms. The message that came across is keep hospital attendance to the absolute minimum. I think I will be sending my daughter to her next clinic with anti bacterial wipes, hand sanitizer and a facemask. Trust me I’m not being hysterical. My daughter had never had pseudomonas until after her last visit, something we were grateful for, but this has now changed.
I suppose another thing that struck me was how the main focus is on the lungs, however this is a multi organ effect condition and this can complicate things where meds are concerned as some of the new drugs can’t be taken by someone with liver disease for example.
The day ended with a stand-up comedian with CF called William Marler who has a pod cast, you can find him at www.lungspodcast.co.uk. He was pretty inspirational as are most people with CF including my daughter. Chatting to the other mum there from Jersey about our girls, I could hear from her how her daughter does not let this condition hold her back. We decided we had heard only positive stories of how this challenge drives them to attain as normal a life as possible, not seeking sympathy but empathy.