The Pulmonary Hypertension Association UK
The only charity in the UK dedicated to supporting those with pulmonary hypertension (PH).
Established in 2000, the Pulmonary Hypertension Association UK (PHA UK) has grown to a membership of almost 4,000.
PHA UK is committed to helping improve the lives of people living with PH. As well as supporting those affected by PH, it helps raise awareness of the condition, contributes to research and gives patients with PH a voice.
The work of PHA UK is focused around four key areas:> Awareness and education
> Support for people affected by PH
> Influence and advocacy
Awareness and education
Patients with PH often find it frustrating that other people don’t understand what PH is, or how it affects their lives, and many patients wait too long for a diagnosis. Education and raising awareness of PH among the medical community and the general public is therefore integral to PHA UK’s work.
Education for healthcare professionals
PHA UK encourages doctors, nurses and healthcare workers across all disciplines to learn more about PH through their medical education programme.
Pulmonary Hypertension: Diagnosis and Management is an online course delivered in collaboration with Edge Hill University. It is worth 20 academic credits towards a degree or can be used as part of continuing professional development (CPD). To find out more, contact [email protected] or visit www.paheducation.co.uk
PHA UK also offers regular workshops and training days to help doctors and nurses recognise the signs and symptoms of PH, and understand how best to support patients. Click here to read more about upcoming events like this.
Support for people affected by PH
The PHA UK website offers online support for the PH community by providing information and advice for patients and their families. A secure social media forum also offers a private place for people affected by PH to share their experiences.
PHA UK publishes a wide range of supportive books, guides and leaflets that can be ordered free of charge from their website. It also publishes a quarterly magazine (EmPHAsis), and holds conferences and social events for members.
PHA UK's 'PHocus on Lifestyle’ website is another useful resource for the PH community. Launched in 2018, this website focuses on self-management and well-being, and provides information on topics such as complementary medicine, relationships, finances and travelling with PH. Visit https://www.phocusonlifestyle.org to read more.
PHA UK conducts its own research as well as providing grants to individuals and partner organisations to discover more about PH.
Every five years, PHA UK conducts research through a survey of its members about their experience of living with PH. The results from the 2016 Living with PH Survey showed that almost half (48%) of patients wait over a year after first experiencing symptoms before receiving a diagnosis. Click here to see the full results.
Information from this survey reinforces the importance of early identification and intervention of patients with PH and has helped inform materials on the Act on PAH website.
Influence and advocacy
In 2016, PHA UK set up PHocus2021: an advocacy strategy to achieve changes in public policy for people affected by PH. The group is made up of representatives of PHA UK, medical professionals and patients, and it aims to give the PH community a voice.
To learn more about the aims and achievements of Phocus2012, visit www.phocus2021.org
PHocus2021: The four aims for positive change (click to view full image)
How is pha uk funded?
Membership of PHA UK is free. As far as possible, PHA UK also ensures that support materials and events, such as printed resources and conferences, are provided free of charge or heavily subsidised.
PHA UK relies heavily on fundraising support to carry out its work. As an independent charity, it receives no financial support from the NHS or Government funding. The vast majority of its income is generated via fundraising from supporters.
PHA UK receives a small amount from Actelion Pharmaceuticals UK Ltd. and other pharmaceutical companies in the way of support for specific projects and activities.