PHA UK member Ronnie Spinks has learned from experience that when multiple people are involved in your medical care, updates are not always passed between professionals. Here, he calls on other patients to help themselves by sharing information.

“I do believe that, where possible, patients should participate in helping make life better for others, which is why I’m offering this advice.

During clinic appointments, any concerns that affect your way of life can usually be addressed with the doctors and PH team who are in charge of your care, and this also includes anyone who is a family member or who cares for you.

Without any current up-to-date new information your PH team cannot be expected to give their best advice when dealing with your enquiries.

However, patients can help their PH team with updates on any changes to their condition. Also, details of admissions into hospital should be fed back to the PH team where you are a patient, especially when there have been changes to medications or problems.

You may be surprised to learn that not all details about a patient’s hospital visits are automatically fed back to other hospitals, or directly to different doctors – other than to your GP.

Without any current up-to-date new information your PH team cannot be expected to give their best advice when dealing with your enquiries. It also saves doctors time having to readjust their records during assessments at clinics.

From bitter experience, I’ve learned that it’s in a patient’s own interest to either pass on their new information to their PH unit themselves, or ensure some other permitted person involved with their illness does it for them.     

Ronnie and his wife.

Patients are given contact details and phone numbers of their PH unit team, usually at clinics, so it’s always wise to carry these useful details and up-to-date medication details with you. In the event of you becoming ill, it gives anyone treating you the best chance of providing correct PH treatment should that be the cause of you becoming poorly. 

Sadly, I know from actual experience that not every hospital or A&E department has much knowledge about PH as an illness. I’ve had doctors researching PH on their mobile phones, and others telling me I’ve got COPD – plus insisting I have various respiratory conditions during emergency admissions!

I understand this all may sound ‘basic’, but if we all work together at keeping each other up-to-date, then more knowledge will be given to those dedicated to their PH patient’s wellbeing.

The more feedback relating to PH the better results for everyone, as what you may experience during your illness could help doctors find a treatment for others in the future. Never think it’s not worth mentioning any symptoms you believe are to do with your PH illness to the team looking after you, or to any doctors who may treat you for whatever reason.” If you want to share any advice or experiences with other people with PH, please email editor@phauk.org