An investment, not a burden: The findings of our research into benefits and PH

New PHA UK research has revealed what it really means to rely on benefits while living with pulmonary hypertension, and why patient voices must be at the heart of conversations about upcoming welfare reforms.

Almost 300 people living with pulmonary hypertension (PH) in the UK completed our surveys. They found that:

• Half of those claiming benefits with PH struggle to cover the basic costs of living
• If their benefits were stopped, 87% say their physical health would suffer and 93% say their mental health would suffer
• 85% of people claiming benefits with PH receive Personal Independence Payment (PIP)
• 73% feel embarrassed about receiving benefits
• A fifth (21%) of those receiving benefits are also in employment, citing PIP in particular as the reason they can work

Respondents described battling a system they found “humiliating” and “intrusive” while living with a progressive rare disease. 57% found applying for benefits difficult or extremely difficult, using words such as “stressful”, “horrific”, “torturous” and “degrading”.

The UK’s disability and incapacity benefits system is going through its biggest overhaul in over a decade. Some changes are already in force, while others are still working their way through review and legislation. The final recommendations from the Timms review, an independent review of PIP, are due to be published imminently.

Many respondents raised concerns about the impact of the reforms and those currently well enough to work spoke of their worry about what will happen as their health declines.

Dr Iain Armstrong, PHA UK Chair, said: “We will take these findings wherever Government decisions about disability benefits are made, and we will keep saying clearly what I have always believed: benefits are not a financial burden on society, they are an investment in people.

“We invest in filling the potholes in our roads without a second thought. So we can invest in people who have had the misfortune of ill health, and who give back to their families and communities in ways a balance sheet never captures. Nobody should feel ashamed of needing support to live well with a serious illness, and nobody should feel ashamed of being invested in.”

Thank you to everyone who completed our surveys with such honesty.

You can see the full report here.