1000 voices: Living through the pandemic with PH

The lived experiences of the UK’s pulmonary hypertension community during the COVID-19 pandemic

Experiences between April 2020 and July 2021 inclusive


  • 58% of people with PH said their physical health worsened as a result of the pandemic.
  • 47% of people with PH said they found it difficult or very difficult to access support from their GP. 87% said they found it easy or very easy to access support from their specialist PH centre.
  • 43% of people with PH said they had experienced new symptoms of anxiety since the start of the pandemic.
  • 62% of those who live with someone PH describe themselves as an ‘unpaid carer’.
  • 78% of parents / guardians said their child with PH has found the pandemic difficult or very difficult.

Read the full report below:

As the PHA UK’s second survey into the impact of the pandemic on people affected by PH, this piece of research set out to capture wider experiences over a longer time period.

In the summer of 2020, our ‘Shielded Voices’ survey asked about the impact of the first three months of the pandemic, from April to June of that year. It focused primarily on experiences of shielding, and asked questions only of people with a diagnosis of pulmonary hypertension.

This second stage of our research, conducted in early summer 2021, set out to paint a more detailed picture.

Using three separate surveys, we asked patients, loved ones, and parents / guardians too, about the impact of the pandemic on many different areas of their lives. We asked for experiences over a 15-month period from the beginning of the pandemic in early 2020, to the summer of 2021.

This was a period of time punctured by lockdowns, shielding instructions, and the roll-out of vaccinations. It was a pivotal point of history that affected the PH population in many different ways, as this report shows.

We will be using this data, and future research, to engage with NHS services and commissioners to ensure that the needs of patients and their kinship are met.

We will be digging deeper into the statistics presented in this report in 2022. With in-depth interviews and further analysis planned, we will ensure that lessons are learned, and the PH community is heard, as we rebuild after COVID-19.