Pulmonary arterial hypertension patient charter

The Pulmonary Arterial Hypertension (PAH) Patient Charter outlines the standards of holistic care that everyone with PAH should expect to receive. It is based on international guidelines for the diagnosis and treatment of PAH and has been developed by patients, patient advocacy group representatives and healthcare professionals. It is hoped the Charter will help people with PAH, their carers and their healthcare team to communicate effectively with each other, make decisions together and agree on a care plan that is appropriate for you. The resource is a useful guideline that helps you understand what to expect from your diagnosis, treatment and care.

Whilst PAH has relatively low awareness among health professionals and the public, patients should expect to receive a timely diagnosis within less than the two-year average. If you are suspected to have PAH, it is the expectation that you should be offered tests in line with the PAH diagnostic guidelines. These tests include an echocardiogram, a ventilation/perfusion scan, computed tomography pulmonary angiography and a right heart catheterisation.

Your healthcare professional should inform you about available treatments, allowing you to make informed decisions about your care plan. The PAH Patient Charter guides these conversations to support multidisciplinary symptom management and holistic care.

As PAH is a progressive condition, it is important to understand that a regular health assessment should be completed by your healthcare team to ensure symptom management. When discussing the treatment options available to you, your healthcare professional should explain why they are recommending a particular medicine, including the benefits risks, and any side-effects.

A holistic approach to a PAH diagnosis is important to ensure you live well. When discussing your PAH care plan with your healthcare professional, you should expect your doctor to direct you towards support services to also care for your mental health and emotional wellbeing, as well guidance on physical activity, nutrition, family planning and more.