MP lends support to Sheffield rare disease charity
A Chapeltown-based charity has gained the support of its local MP to help drive change for people living with a rare disease of the heart and lungs.
The Pulmonary Hypertension Association (PHA UK) welcomed Angela Smith, MP for Penistone and Stocksbridge, to its office on Friday 23 February.
The aim of the visit was to discuss the work of the charity and to raise awareness of the rare disease pulmonary hypertension (PH) - a life-limiting illness that causes high blood pressure in the blood vessels connecting the heart and lungs. The disease affects just 7,000 out of 64 million people in the UK.
Angela Smith MP said:
“I could see straight away during my visit that the PHA UK puts patients and their families at its heart. I was particularly moved by a short film of a patient who shared her experience of living with the disease. I was also able to meet her during the session and talk at length about the issues she faces on a daily basis.”
During the meeting, Professor David Kiely, respiratory physician at the Sheffield Pulmonary Vascular Disease Unit at the Royal Hallamshire Hospital, highlighted the nine specialist PH centres across the UK.
“It’s really positive to hear that the Royal Hallamshire Hospital in Sheffield is a centre of excellence in PH treatment - providing the very best care to patients not just in our city, but as far as Manchester and Cumbria.
“As a rare disease charity, I believe it’s important for PHA UK to work with others in the rare disease sector and to be a beacon of hope for patients. The charity has already made great strides in its campaign to drive public policy change and I’m very pleased to be able to provide support to the charity in any way I can.”
In 2017, the PHA UK launched the advocacy programme PHocus2021 to campaign for public policy changes that will improve quality of life for people living with PH. PHocus2021, is aiming to reduce the time to diagnosis, ensure access to treatments and reduce financial hardship incurred by living with the disease.
Iain Armstrong, chair of PHA UK, said:
“We know that everyday life can be very challenging for people with pulmonary hypertension but not many people are aware of the disease. We hope that by engaging in discussion with our local MP, and lobbying in Westminster through our PHocus2021 programme, we can help to dramatically improve the circumstances for people living with PH. Our aim is to make significant progress by the year 2021.”
Symptoms of PH typically involve breathlessness, fatigue, black-outs and swelling around the ankles, arms and stomach. PH affects the ability to carry out basic tasks and get around.
Adult patients with PH are treated at seven specialist centres across the UK including at the Royal Hallamshire Hospital in Sheffield. Children with the disease are treated at Great Ormond Street Children’s Hospital in London.