What does it mean to live with PH today?

This survey has now closed. Thank you to everyone who has taken part. The findings will be available soon!

(This survey is for adults with pulmonary hypertension who live in the UK)

Five years ago, here at the PHA UK we conducted the largest ever survey into the lived experiences of pulmonary hypertension in the UK – and it is now time to see what’s changed.

The impact of that survey has been huge. Since 2017, the findings have been used to inform and underpin our work as a charity, secure access to new treatments, and influence government decisions.

They have been used in our collaborative work with NHS commissioners and specialist centres, and they have influenced the National Audit of PH, service provision, and much more.

It’s vital that we understand what it really means to live with PH now, so we can compare the findings and use new evidence to influence change. This is especially important as we move out of the pandemic and work to secure access to the best treatments and services for this disease.

If you are an adult with pulmonary hypertension, living in the UK, please complete this survey

We plan to conduct a separate survey around children and PH in the coming months.

The finding of this survey will influence so much over the next five years, so it cannot be underestimated how important your voice is today. Please take the time to share it if you can.

Access the results from our Living with PH survey conducted in 2016.