Media

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

If you are a journalist and would like to talk to someone about PH you can contact us at the PHA UK office on 01709 761450 or office@phauk.org. For additional media support contact our PR team on 01226 766900 or mary@capitalbmedia.co.uk

PHA UK representatives may be available for interview by arrangement – these include frontline NHS professionals involved in PH treatment and care and patients and families affected by the condition.

Please see our NEWS section for latest news items and press releases.

Pulmonary Hypertension – a journalist’s guide (FAQs):

What is PH?

PH is a rare lung and heart condition. It occurs when the walls of the pulmonary arteries thicken and become stiff or are blocked by blood clots, which makes it very difficult for them to expand and allow blood through to the lungs. This places far greater pressure than normal on the right side of the heart as it pumps the blood. It can cause extreme breathlessness, blackouts and heart disease.

What causes PH?

Research is still being carried out into the causes of PH. It can affect people of all ages including babies, children, pregnant mums, adults and older people.

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

  • portal hypertension
  • connective tissue disease, eg systemic sclerosis
  • HIV infection
  • congenital heart disease
  • sickle cell anaemia

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?

Around 7,000 people are currently diagnosed with PH in the UK – awareness of the condition has improved in the last 15 years, however it is still a rare condition and it is not known how many cases go undiagnosed. PH can take two and half years to diagnose and is often mistaken for conditions such as asthma at first.

Can PH be cured?

There is no cure for PH. There are, however, a range of treatments to manage the chronic condition available through NHS specialist centres; and life expectancy for those with the condition is six to seven years. A double lung and heart transplant is a treatment option for many with the condition.

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?

PHA UK provides information, support and advice to people with pulmonary hypertension. The charity has nearly 3,000 members and helps to fund thousands of pounds worth of research, health education initiatives, projects and events to promote better understanding, diagnosis and treatment of the disease and raise awareness of the condition.

The charity was set up in 2000 by a small team of volunteers – patients, family members, friends and frontline health professionals. It is now at the heart of a nationwide PH community, providing a network of mutual support, experience, high quality information and advice.

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 magazine (‘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.

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@phauk.org

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.

Last medically reviewed: October, 2016 • Due for review: October, 2019