Press and PR

This section of the Pulmonary Hypertension Association (PHA UK) website aims to provide information about pulmonary hypertension (PH) and the PHA UK, for journalists. It also provides members of the PHA UK with guidance on media relations.

Information for journalists

Frequently asked questions about PH

What is PH?

PH is a rare lung condition where the blood pressure in the pulmonary arteryThe blood vessel delivering blood to the lungs from the right side of the heart rises far above normal levels. This leads to progressive damage to the heart and lungs.

What causes PH?

In many people the cause of PH is unknown. In very rare cases PH can be inherited.

PH is also associated with a number of other medical conditions such as:

• portal hypertensionHigh blood pressure in the vein that carries blood to the liver. This is often caused by liver disorders.
• connective tissue disease,Any of many conditions where the connective tissues are attacked. Connective tissues are the framework that link together things like bone, organs and skin. Many connective tissue diseases involve an abnormal immune response. eg systemic sclerosisA disease involving thickening of the skin and tissues in and around internal organs. More than 1 in 10 people with systemic sclerosis develop PH.
• HIV infection(Human Immunodeficiency Virus): The virus that causes AIDS. HIV infection increases the risk of a person developing PH.
• congenital heart diseaseA heart condition that is present at birth. Sometimes, congenital heart disease will not be found out until later in a child’s life, sometimes at the time of being diagnosed with PH.
• sickle cell anaemiaA disease where the red blood cells (the cells that carry oxygen) are defective. Sickle cell disease is an inherited disease almost exclusively found in black people of African descent. People with sickle cell disease are more likely to get PH.

What are the symptoms of PH?

The main symptom of PH is breathlessness. This is the symptom that people will normally notice first. Other symptoms may include chronic fatigue, dizziness, feeling faint, swelling of the feet or ankles, and chest pain (particularly during exercise).

How common is PH?

There are approximately 4000–5000 people in the UK with PH. It is estimated a further 2000–3000 remain undiagnosed. PH is frequently misdiagnosed as the symptoms can easily be confused with other medical conditions. In some patients, PH has often progressed to a late stage before an accurate diagnosis is made.

Can PH be cured?

There is no cure for PH. Before 1990 the average survival for people with PH was 2–3 years. However, new treatments are now available which have significantly improved the outlook for people with PH.

Where do people with PH get treated?

There are nine specialist PH centres in the UK and Ireland:

• Freeman Hospital, Newcastle
• Golden Jubilee National Hospital, Glasgow
• Great Ormond Street Hospital, London
• Hammersmith Hospital, London
• Mater Hospital, Dublin
• Papworth Hospital, Cambridge
• Royal Brompton Hospital, London
• Royal Free Hospital, London
• Royal Hallamshire Hospital, Sheffield

What is the PHA UK?

The PHA UK is the only charity in the UK that provides support, information and advice to people affected by PH. The PHA UK aims to raise awareness of PH and act as an advocate throughout the UK for all those affected by PH.

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

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

The patrons of the charity are:

• Professor Sheila Haworth
• Professor Tim Higenbottam
• Professor Richard Trembath
• Mrs Valerie Singleton OBE
• Mr Richard Briers
• Mr Derek Fowlds

Donations and funding for the PHA UK are received from members, businesses, a large regular donation campaign and governmental grants.

Donations received by the PHA UK go towards funding a number of initiatives. These include:

• The PHA UK website
• A quarterly newsletter (‘emphasis’)
• Patient grants
• Educational grants for medical professionals
• A national conference
• Regional support groups
• Educational and support materials
• An annual PH awareness week
• Targeted media awareness campaigns
• An all-party group for pulmonary hypertension in the House of Commons
• Family weekends for children with PH and their families.

Join the PHA UK press office mailing list

If you would like to receive press releases from the PHA UK, please fill in your details below. Please note this form is for journalists and freelancers only.

If you would like to interview someone from the PHA UK, or need further information, don’t hesitate to contact our media team.

Email: media@phassociation.uk.com

Information for PHA UK members

Sometimes members of the PHA UK may have to talk to the media, eg local newspapers, radio stations, etc. This could be to publicise a particular event or you may have been asked to tell your story. The PHA UK has developed a media relations guide for its members to help you deal with situations involving the media.

The guide provides useful information about media relations including:

• how to publicise an event
• notifying the press about a news story
• how to write a press release
• handing the media
• interview techniques.