Voices from the UK's pulmonary hypertension community
“People living with pulmonary hypertension made huge sacrifices throughout the COVID-19 pandemic to protect the NHS. We must never forget what they and their loved ones did, the challenges they faced, and the strength and resilience they showed.”
– Dr Iain Armstrong, Chair, PHA UK
People with pulmonary hypertension were affected in different ways during the pandemic, but all were classed as clinically extremely vulnerable to the virus. It is important that their experiences are understood, and the aim of this project is to bring what they went through to life.
It’s not just those with a diagnosis that were affected. This project, completed by ourselves at the Pulmonary Hypertension Association (PHA UK), showcases the experiences of carers and loved ones too.
We spoke to over 30 PHA UK members about their experiences of the COVID-19 pandemic.
This qualitative research follows previous survey work by the PHA UK which investigated people’s experiences of shielding, and of the first 15 months of the pandemic.
You can view both of these reports here.
Whilst this previous research mainly reported statistics, the ‘My Pandemic’ project has been focused on stories, adding important narrative detail to pre-existing findings.
The project also invited the PH community to submit photographs and memories from their pandemic, which now form this online exhibition.
Interviews were conducted during the summer of 2022 and this website was launched on 4th November 2022, to coincide with PH Day UK. We now have a rich collection of voices to ensure lessons are learned and stories from this time are never forgotten.
GET INVOLVED: We would like to continue to add to the collection of stories and experiences on this website. Please email office@phauk.org if you would like to talk to us about your pandemic or submit an item for our online exhibition.
Pulmonary hypertension (PH) is a rare and serious condition that causes high blood pressure in the blood vessels connecting the heart and lungs (the pulmonary arteries).
The main symptom is breathlessness, and the disease has a significant impact on quality of life, as well as life expectancy.
PH affects just 8,000 people in the UK, including children. There is no cure, and the condition can eventually cause heart failure.
A range of highly advanced treatments developed over the last 20 years has seen quality of life improve and life expectancy double to around six to seven years on average, with many living longer. A few people with PH undergo heart and lung transplants.
As well as breathlessness, symptoms of PH include fatigue, blackouts, and swelling around the arms, ankles and stomach.
You can find out more about the condition by watching this short animation.
The Pulmonary Hypertension Association (PHA UK) is based in Sheffield and works nationally to support people affected by PH.
It is the only charity in the UK dedicated to supporting the PH community – made up of patients, their family and carers, and NHS professionals too. It provides information, support and advice; and funds thousands of pounds worth of medical research and health education initiatives to promote better awareness, diagnosis and treatment of the disease.
PHA UK is a registered charity no: 1120756
Visit the PHA UK website here.
PHA UK Resource Centre, Unit 1, Newton Business Centre, Newton Chambers Road, Thorncliffe Park, Chapeltown, Sheffield, S35 2PH
Tel: 01709 761450
Fax: 01709 760265
Email: office@phauk.org
