PHA UK Support Nurses Paul Sephton and Sian Richardson say:

“Never feel like you are ‘bothering’ the clinical nurse specialists (CNSs) and never feel embarrassed about asking a question. It’s what they are there for, and they want to help.

If you don’t feel comfortable calling, or you want to ask something on a Sunday afternoon when it’s on your mind, then you could email instead. Most centres have a dedicated central email address that you can reach the nursing team on.

Your email will always be answered as soon as possible, and if you call and leave a message, that will be returned in a timely manner too. Nurses are always busy – it’s all part of the job! – but they want to help you.

It may be your family and loved ones who have questions, and it’s absolutely fine for you to contact your nurses to ask these questions too.

Your CNSs work as a team, so it may not always be the same person you speak to when you call, or the same person who answers your email each time. But rest assured that everyone will deliver the same high standards of care.

It’s important to remember that in an emergency, or if you need urgent advice or immediate action, you need to call 999 or go through your GP service or local hospital. For anything that can wait 24-48 hours, contact the CNS team.

The key message here is that you’re not on your own. CNSs are there for you when you need them and they provide supportive advice and care at all stages of your journey.

We used to be Clinical Nurse Specialists and since retiring from the NHS, we now work as part-time support nurses here at the PHA UK. That means we can help with general questions about PH, and as registered nurses, we’d be very happy to hear from you. You can email us at

Please be aware though that because we work for a charity, not a hospital, we don’t have access to test results, clinical letters or medical notes – so specific questions about your circumstances will need to be directed to your specialist team.”