New research shows people still wait too long for a PH diagnosis

Posted on November 3rd 2023

New research by the PHA UK shows that people are still waiting too long for a diagnosis of pulmonary hypertension (PH).

Over 800 patients were surveyed during 2023, and 32% of respondents said they waited over three years to be told they had the life-limiting disease. This compares to just 10% of those surveyed in 2016 – meaning the figure has trebled in the last seven years.

The findings, released on PH Day UK (3rd November), also showed that the number of patients waiting over a year to be referred to a hospital by their GP – after reporting symptoms – has doubled. In 2016 this represented 21% of patients, compared to 40% in 2023.

Almost a third of patients had to see four or more doctors before receiving their diagnosis, and for 51%, it took over a year to be diagnosed with PH after first noticing symptoms.

The PHA UK has conducted a survey into the lived experiences of the disease every few years since 2007, and the results consistently show that despite significant advances in treatment, the long waits for diagnosis have remained.

To launch the findings of the most recent survey, the PHA UK spoke to nine people on camera about their experiences of diagnostic delays. You can hear their stories in this short film.

You can watch Dr Iain Armstrong, Chair of the PHA UK, discuss the problems with delayed diagnosis here.

The 2023 survey was completed by 859 people with PH in the UK – making it the charity’s largest ever study into the lived experiences of pulmonary hypertension. As well as experiences of diagnosis, it asked patients about the impact of treatment, satisfaction with the specialist PH service provided by the NHS, and how the disease affects different areas of their lives.  

Read the full report, Breathless, not voiceless: What it means to live with pulmonary hypertension today, here.