Posted on July 14th 2026
New PHA UK research is aiming to put patient voices at the heart of conversations about upcoming benefit reforms.
The UK’s disability and incapacity benefits system is now going through its biggest overhaul in over a decade, unfolding across several fronts at once. Some changes are already in force, and others are still working their way through review and legislation – so now is the time for the PH community to make themselves heard.
People living with PH are being invited to share their thoughts and experiences via two surveys – one for those in receipt of benefits, and one for those who do not claim benefits. The aim is to understand how potential reforms may impact our community, and to use this evidence to help influence policy decisions if needed.
We’ve put together this information page to help people understand the existing and proposed disability and incapacity benefits changes.
Do you live with PH in the UK?
We want to hear from people in different financial situations and with different experiences. Please complete one of our surveys if you are aged 18-65 (‘working age’), you have a pulmonary hypertension diagnosis, and you live in the UK.
If you are currently in receipt of benefits, please complete this survey.
If you are not in receipt of benefits, please complete this survey.
