Media Relations

For Journalists: This page aims to provide a useful resource to help you find out more about Pulmonary Hypertension (PH). Should you wish to interview someone from our organisation, require help sourcing a case study or require any further information, please don’t hesitate in getting in touch with our media team by emailing: media@pha-uk.com. If you’d like to join our media mailing list to receive regular information on our activities click here.

For PHA-UK Members: A practical guide to media relations prepared especially for you. This has been designed specifically to provide members with guidance on obtaining press coverage. Click here to access this word document.

Frequently Asked Questions About PH

What is PH?
Pulmonary hypertension (PH) is a rare lung disorder in which the blood pressure in the pulmonary artery rises far above normal levels, usually with no apparent reason.

What are the symptoms?
Symptoms include chronic fatigue, shortness of breath (dyspnoea), chest pain (angina), fainting, swollen ankles and legs (oedema), and fluid in the abdomen (ascites). These are also symptoms for other diseases such as congestive heart failure; therefore physicians should rule out other diseases before making a diagnosis of pulmonary hypertension.

What causes PH?
Pulmonary hypertension may develop after pregnancy, hypothyroidism, pulmonary embolism, autoimmune disorders, or human immunodeficiency virus (HIV) infection or result from the use of drugs such as appetite suppressants, oral contraceptives, and cocaine.

How common is PH?
Although there is no accurate record of the incidence of PH there are approximately 4,000 PH sufferers in the UK and it is estimated that there are an additional 4,000 undiagnosed sufferers.

Pulmonary hypertension is frequently misdiagnosed and often progresses to late stage by the time it is accurately diagnosed.

Can PH be cured?
PH has been historically chronic and incurable with a poor survival rate. However, new treatments are available which have significantly improved prognosis.

Primary pulmonary hypertension
When pulmonary hypertension occurs in the absence of a known cause, it is referred to as primary pulmonary hypertension (PPH). There are likely many unknown causes of PPH. PPH is extremely rare, occurring in about two persons per million population per year.

Secondary pulmonary hypertension
Secondary pulmonary hypertension (SPH) refers to PH when the cause is known.

Common causes:

1. breathing disorders
2. emphysema
3. bronchitis.

Less common disorders:

1. Inflammatory or collagen vascular diseases such as scleroderma, CREST syndrome or systemic lupus erythematosus (SLE)
2. Congenital heart diseases that cause shunting of extra blood through the lungs like ventricular and atrial septal defects,
3. Chronic pulmonary thromboembolism (old blood clots in the pulmonary artery),
4. HIV infection
5. Liver disease
6. Diet drugs like fenfluramine and dexfenfluramine

Specialist PH Centres

There are 8 specialist PH centres in the UK:

1. Western Infirmary, Glasgow
2. Freeman Hospital, Newcastle
3. Royal Hallamshire, Sheffield
4. Papworth Hospital, Cambridge
5. Great Ormond Street Hospital, London
6. Hammersmith Hospital, London
7. Royal Brompton Hospital, London
8. Royal Free Hospital, London

Who Is PHA-UK?
The PHA-UK was first registered as a charity in September 2000 and is dedicated to building and strengthening the PH community.

The mission of PHA-UK is to raise awareness of the disease, which is often misdiagnosed and to be an advocate throughout the UK for all PH patients. We aim to support and educate sufferers and their friends and families to provide hope amongst all of those who are touched by the condition.

The PHA-UK works alongside other charities and is a member of PHA Europe and the Heart Care Partnership - affiliated to the British Cardiac Society

PHA-UK is managed by 10 trustees and has developed a solid foundation to meet future challenges in supporting the growing sector of society affected by PH.

The Patrons of the charity are:

• Prof Sheila Haworth
• Prof Tim Higgenbottam
• Prof Richard Trembath
• Mrs Valarie Singleton OBE
• Mr Richard Briers
• Mr Derek Fowlds

The aims of the charity are to provide a brighter future for all those affected by Pulmonary Hypertension. This is achieved by utilising donations to provide:

• A website www.pha-uk.com
• A freephone helpline
• A quarterly Newsletter
• Patient grants - these can be to help meet the costs of supplementary oxygen on flights, travel/accommodation expenses for hospital visits, specialist buggies for children, equipment etc.
• Educational grants for medical professionals e.g. PHA-UK sponsored specialist nurses.
• A national conference
• Regional support groups
• Educational and support materials
• A patient and health professional video 'Living with PH'
• An annual PH awareness week
• Targeted media awareness campaigns
• All party group for pulmonary hypertension in House of Commons
• Family weekend for children affected by PH
• Funding for a research project looking into the effects of exercise in PH patients

Donations and funding for PHA-UK are received from members, businesses, a large regular giving campaign and government grants.

Join the PHA-UK press office mailing list

Please fill in your details to receive press releases by email. Please note this form is for journalists and freelancers only.