Have come across this press release from the NHS mentioning CF, are we PCD patients also to be included?
NHS At Home monitoring: Have come... - PCD Family Suppor...
PCD Family Support Group (UK)
Hiya - yes ... we are working with the NHS to get this for PCDers too. All children have already got spirometers- we are just working with the adult physicians to work out the most effective machines for adults.
Hi Fiona, thank you and good luck with getting Spirometers or anything for adults with PCD. In the 50+ years since I was finally diagnosed at age 33 I have had to fight to get anything, eg. never had respiratory physio until found one to do it privately earlier this year. Best regards.
Sorry to hear this ... our adult service has now been commissioned. You should now have access to physios as part of this service. You just need a referral from your GP to either Southampton, Leicester, Leeds or the Brompton. Email us at firstname.lastname@example.org if you need further info
This says for NHS England. Are there any plans for a roll out in Scotland that you know of?
Thanks Fiona, I went to see Prof O,Callahan at Leics last year, who finally clinically confirmed at age 84 PCD! I’ve been patient at QE University Hospital Birmingham for 60 years, finally last July got to see consultant who knew about PCD, Dr Sullivan. Had found her by going on line and paying to see qualifications and interests of all respiratory consultants, consultant I had been seeing was no real help. Dr Sullivan arranged Nebuliser, but couldn’t offer physio until March this year. I don’t go hospitals during winter flu season. Dr Sullivan runs Bronchietasis clinic, I didn’t know about. It was because of bronchitisasis that Kartagener was diagnosed at age 33. I’m hoping that by joining in research my experience will help others
Thank you! Perhaps you might like to write a little story about your PCD journey for our website! Hope you are keeping well.
Hi Fiona, yes will do when have time! As a widow living alone am kept busy with house, garden etc. Nebulising helps, but that and drainage afterwards takes up 3-4 hours a day! Think main thing is stay positive, don’t think can’t do something until tried, then look for alternative. I’m ok, will be glad when allowed out in my cars again, still have late husbands Classic Jag XJS, not worth much but lovely to drive, but not to supermarket carpark.