Make the most of your time with your consultant by writing down all the issues you have before you go to the appointment.

Making the most out of consultants’ time

Your consultant will be your doctor for a long time so it is important that you have a good relationship with them and their team. They will get to know you and your family very well so it is best to be open and honest with them from the start.

Let them get to know what is important to you (e.g. annual holidays, sporting activities). The more that they get to know you as a person the better they will be able to help you overcome some of the obstacles that living with PCD presents.

It is important to think about any issues/problems you have before you go to the appointment. Some people find it useful to keep a health log so that you and the consultant can pick up patterns. Recording how much sputum your child has cleared on a daily basis or changes such as tiredness, pain, night sweats and temperatures can be a useful way of monitoring flare-ups.

The NHS has a useful Questions to Ask page, which may be helpful when planning your appointment.

It is helpful if you can take another adult with you to the appointments so that you can concentrate on talking to the doctor whilst your child is being entertained by somebody else.

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.