Chapeltown charity reveals financial impact of rare disease

A CHAPELTOWN charity has revealed the results of its research into the financial impact of pulmonary hypertension.

The Pulmonary Hypertension Association (PHA UK) has found people living with the rare disease are suffering financial distress and an unfair battle for benefits.

The life-limiting condition affects the heart and lungs and the charity’s research shows that on average, patients in full time work at the time of diagnosis lose a third of their income. Over 80 per cent of those who have applied for benefits found the process difficult or ‘extremely difficult’. Over half were turned down upon first application, but 78 per cent of those who appealed had their application approved in the end.

PH affects just 7,000 people in the UK. There is no cure and if patients don’t respond to treatment, they may undergo a lung and / or heart transplant.

The results of the research show over half of people with PH say they now have more difficulty paying bills, and 84 per cent say life or travel insurance quotes are now more expensive.

The PHA UK, the national charity for people affected by pulmonary hypertension, will use the results of its financial impact survey to campaign for change.

Iain Armstrong, chair of the PHA UK, lives in Stocksbridge. He said: “Pulmonary hypertension is a disease which robs people of their financial stability, through no fault of their own. This research shows just how serious the problem is and we now have strong evidence that the unfair benefits system is simply adding to the financial distress facing PH patients and their families.

“It’s abhorrent that patients are having to go through appeals and tribunals simply to get what they are entitled to, battling ignorance along the way. These people are being let down by the very system set up to support them.”

Symptoms of PH typically involve breathlessness, fatigue, black-outs and swelling around the ankles, arms and stomach. The disease affects the ability to carry out basic tasks and to get around and it can affect anyone, of any age.

The Royal Hallamshire Hospital in Sheffield houses one of only seven specialist PH treatment centres across England, Scotland and Wales.

The PHA UK is the only charity in the UK dedicated to supporting the PH community; made up of patients, their family and carers, and NHS professionals.

The full results of the PHA UK’s financial impact survey can be accessed here.