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.
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.
14 July 2026
Few places are escaping the heat right now, and it's important to ensure you're storing and managing your medications properly. Dr Neil Hamilton, Consultant Pharmacist in PH, has this advice:
13 July 2026
Twice a year, NHS specialists from across the UK gather to plan services for respiratory conditions including pulmonary hypertension – and whilst these Clinical Reference Group (CRG) meetings happen behind the scenes, they can have a big influence on the care patients receive at their centres.
25 June 2026
The manufacturers of PAH treatment Flolan have confirmed it will be discontinued in the UK from 2028, and plans are being put in place to move patients to alternative medications over the next two years.
11 June 2026
The new PAH drug sotatercept has now been approved for use in eligible patients in England and Wales.
14 May 2026
The Scottish Medicines Consortium (SMC) has accepted the new PAH drug sotatercept for ‘restricted use’ in eligible patients in Scotland.
13 April 2026
