Make sure that the GP feels that it’s ok ‘not to know all the answers’ - the relationship then becomes 2 way.

If you have PCD you will become an ‘Expert Patient’ as you will most likely know more about PCD than your GP.

It is important that you have a good relationship with them and that they are aware of your medical condition and your current treatment/medication regime. You could take a letter from your consultant about your care plan, (and to ask for an update to this from time to time).  This may have already been sent to the GP, but it saves time and adds influence and confidence if you can produce a copy and have it as solid evidence of what you need.  Further advice available here.

You will need to become proactive in your own or your child’s care, e.g. you may need to explain why you need another course of antibiotics and a minimum of a two week course (if you are an adult as per BTS Non-CF Bronchiectasis Guidelines – Page 5 Section 5). You will also need to explain what bugs you have recently grown and what they were treated with.

You will also need to ask for a sputum test (ask them to test using CF Protocol) so that antibiotics are targeted.

Offer them PCD leaflets and recommend that they contact your PCD Specialist Nurse or Consultant for advice if required.

Case Study

Keeping ahead of COVID-19

Covid-19 is very unsettling for all of our PCD community – we will be regularly updating this page with latest information and ideas on how to keep yourselves entertained whilst self-isolating.