Founder of national charity based in South Yorkshire awarded MBE

13 June 2014

A woman who set up a national health charity based in South Yorkshire has been awarded an MBE. Kay Yeowart has been recognised in the Queen’s Birthday Honours for her personal contribution to setting up the Pulmonary Hypertension Association UK (PHA UK).

PHA UK provides information, support and advice to people with the rare heart and lung condition, pulmonary hypertension. The charity has nearly 3,000 members and funds thousands of pounds worth of medical research and health education initiatives to promote better awareness, diagnosis and treatment of the disease.

Its office today is based at Manvers in Rotherham but it was set up in 2000 by a small team of volunteers - patients, family members and health professionals – and Kay ran the charity from her front room.

Kay, whose son has pulmonary hypertension, said: “At first we used to run the association from my home. I organised the meetings; wrote, printed off and posted newsletters and answered the helpline from here.

“Setting up PHA UK involved a tremendous amount of effort by a small group of volunteers before we were able to take on our charity’s national offices in South Yorkshire. I’m proud to have been part of that and I’d like to accept this honour for the charity as a whole.”

Chair of PHA UK Iain Armstrong, who works at Sheffield’s Royal Hallamshire Hospital Pulmonary Hypertension Centre, said: “We are delighted to see Kay’s work recognised in the Queen’s Birthday Honours. It is impossible to overestimate the significance of

Kay’s contribution to the charity both now and in the very beginning when a small group of us came together to set up a simple support network for people affected by pulmonary hypertension.

“PHA UK has grown out of that initiative and we wouldn’t be here today if not for the commitment and drive of Kay and the rest of the volunteers.”

Chair of the Pulmonary Hypertension Physicians Group of UK and Ireland Dr David Kiely, who also heads up the Royal Hallamshire’s PH centre said: “I am absolutely delighted with Kay’s award of an MBE. Kay and everyone at PHA UK has worked tirelessly to represent the views and interests of patients and their families. Kay is a great example of how an individual can make a real difference to peoples’ lives”

Kay, who lives in East Sussex, is still a trustee and secretary of PHA UK. Over the last 15 years, she has petitioned Parliament about the funding of drugs for PH, visited Downing Street to raise awareness of PH and spoken at international medical conferences.
Kay organised PHA UK’s first annual conference in 2001 and this annual event now attracts 250 delegates a year from all over the UK.

Kay says her family’s own experience of pulmonary hypertension led her to get involved in setting up the UK’s only charity dedicated to this disease.

She said: “We were very thankful for the way our own son, Lewis, responded so well to his medication for his PH that I wanted to give something back.”

Lewis suddenly became ill as a teenager in the late 1990s. He was severely breathless, suffering with fatigue and so weak he was given an electric scooter to get about. Awareness of pulmonary hypertension was minimal then and his parents, Kay and David, had to take him to New York in 1998 to get him a diagnosis of PH and start a course of targeted medication for the disease. Lewis returned to the care of Great Ormond Street Hospital.

Kay said: “Lewis had previously been very healthy and news of this devastating disease was overwhelming. But, we were very lucky, Lewis responded so well to his medication and his symptoms are now completely under control and he leads a full and busy life. Many others are not so lucky.

“Whilst the advances in diagnosis and treatment for pulmonary hypertension in the UK since then have been tremendous, we all hope for a cure and, in the meantime, we work hard to improve the quality of life for everyone with the condition.”

“I was determined that other families should never feel as isolated as I did when Lewis became ill and I am delighted to have been part of the formation of PHA UK.”

People can be born with pulmonary hypertension or develop it at any time. Effects of the condition vary, but can typically involve breathlessness, fatigue, black-outs and other life-limiting symptoms. Many people with PH can rely on 24-hour intravenous medication direct into the bloodstream or other daily drugs; some need regular or constant access to an oxygen supply. The impact of PH can be fatal. A significant number of PH patients undergo lung and heart transplants to combat the condition.

PHA UK now supports a network of nine specialist PH Centres in NHS hospitals across the country. Doctors and healthcare professionals are able to identify and diagnose PH much more quickly and have a range of effective medications and treatments to help patients manage the effects of the disease.

Notes to editor

Photo shows Kay Yeowart.

Kay Yeowart will receive an MBE from the Queen for her services to those affected by pulmonary hypertension and for being a founder member of the PHA UK.

For further information call the PHA UK office on 01709 760265 or e-mail office@phassociation.uk.com

Visit www.phassociation.uk.com

To see an interview with Kay Yeowart see: www.phassociation.uk.com/about_the_pha/our_story.php

PHA UK is a registered charity no: 1120756

PHA UK is based at Unit 3A, Enterprise Court, Fairfield Park, Manvers, Rotherham, S63 5DB.

Additional media contact, Steph Pollard steph@capitalbmedia.co.uk 01226 766900 or 0776 196 4492.

 

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