Money and me: PH patients share their stories

25th July 2017

Pulmonary hypertension patients have taken to Facebook to share the ways in which the condition affects their finances.
As the Pulmonary Hypertension Association (PHA UK) prepares to launch targeted research into the impact of PH on personal finances, the charity asked its social media followers for their experiences.
These are some of the patients making their voices heard.



“I’ve had to reduce my working hours because of my PH. It costs me £50 in petrol to travel to my hospital appointments in London and takes nearly three hours. My appointments range from one a month to one every three months. If I’m kept in, it costs my husband £55 per night to stay in hospital accommodation.”Manda

“I’ve spent all my inheritance. It took a year off work to diagnose me so we went from two salaries to none as I had to be cared for, and we got no financial help so boom, everything we had was gone. Being in hospital for three months also costs a fortune, especially as it was over Christmas.”Ros

“My electricity costs me more because I have my oxygen machine on all the time, plus a fan because the machine heats up.”Tracy


“Having PH has massively affected our financial situation. We’ve gone from two full-time salaries, to none, to relying on the benefits system, which is even more difficult with something the Department of Work and Pensions (DWP) don’t understand, like PH.”Jayne



“We have had to tighten our belts all of this year since I was diagnosed with PH. I was off work for four months before going back part time for four hours a day. It’s very hard to live on Statutory Sick Pay. I tried to get help from welfare benefits but they say we earn enough to live, which is bad considering I’ve seen lots of people who claim benefits, who can walk and are able to work.”Mark