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PRESS RELEASE: People living with the rare lung disease pulmonary hypertension saw their physical health deteriorate whilst shielding, according to a new report.

Research by the Pulmonary Hypertension Association (PHA UK) showed that almost half (47%) of patients with the disease felt their physical health worsened during the first three months of the pandemic.

Pulmonary hypertension (PH) causes high pressure in the blood vessels connecting the heart and lungs. The life-shortening disease affects just 8000 people in the UK and symptoms include severe breathlessness, fatigue, blackouts and swelling around the ankles, arms and stomach.

People with PH are classed as ‘extremely clinically vulnerable’ to COVID-19.

The research by the PHA UK showed that during the first three months of shielding 36% of people with the condition lost fitness, 27% gained weight and 20% felt the effects of sleep deprivation.

Patients also felt their PH symptoms worsen, with 29% reporting increased breathlessness, 30% reporting increased fatigue, and 11% reporting increased dizziness or fainting.

The findings of the research, Shielded Voices: Lived experiences during the early stages of the COVID-19 pandemic, have been published to mark PH Awareness Week, which runs 2-8 November.

Judy Bugg, 65, lives in Peterborough and was previously very active - despite having PH with other lung conditions. She said: “Physically, I was very much affected by shielding. Despite needing oxygen, I would usually walk and go to the gym. But because I couldn’t go out, it got to the point where I could hardly walk to the bathroom without getting totally out of breath. I got to a stage where I said, ‘I don’t want to go on like this’. I’m now working hard to get back to the fitness level I was at before.”

The research by the PHA UK also shows that people with PH struggled with their mental health during the early stages of the pandemic. Of the 824 people who responded to the survey, 90% said their emotional or wellbeing had been affected. 85% said they felt anxious, 66% said they felt depressed and 58% reported loneliness.

Iain Armstrong, chair of the PHA UK, said: “Those shielding because of pulmonary hypertension made significant sacrifices to protect themselves, but just as importantly, to protect the NHS too. And for some, as our research shows, it came at the expense of both their physical and mental health.

“We must learn from their experiences for future health emergencies and ensure that those with rare diseases like PH continue to access high quality care and support.”

Dr John Wort, chair of the UK Pulmonary Hypertension Physicians Group, said: “It is clear that the physical and mental impact of the coronavirus pandemic has been enormous for people with PH. It makes their sacrifice in shielding even more incredible, and I agree that we must learn from all of the experiences shared in this very important piece of research.”

You can access the full report here

PH Awareness Week runs 2-8 November and has been organised by the Pulmonary Hypertension Association (PHA UK). The PHA UK is based in Sheffield, South Yorkshire, and works nationally to support people living with the disease.

Image shows Iain Armstrong, chair of the PHA UK