What is pulmonary hypertension?
Pulmonary hypertension refers to a group of conditions characterised by high blood pressure in the blood vessels that connect the right side of your heart to your lungs (pulmonary arteries). It is a rare condition that affects approximately 1 in 20,000 people in the UK unlike the common "raised blood pressure" also known as systemic hypertension. It is important to correctly diagnose, treat and manage pulmonary hypertension because it is a potentially a serious life-threatening condition.
For further information about pulmonary hypertension, please visit the Pulmonary Hypertension Association UK website.
New Patients
How to obtain an appointment?
You will need to be referred to our services by your hospital consultant or GP. Your doctor can post or email a referral letter together with copies of recent investigations.
Once your referral and all relevant information have been received by our team, your case will be listed for a case discussion at our multidisciplinary team (MDT) meeting.
At this meeting we will decide if you require a face-to-face review or alternatively provide an expert opinion to your local team so they can continue with the appropriate management.
This process can take between 4-5 weeks depending on completeness of the information received by our service.
After this time if you have not been contacted by a member of our team, please contact the person that referred you to our service for information.
What happens next
New patients to the PVDU may be seen as a day case on Day Ward (day visit only) or admitted as an inpatient to 4 South West depending on the required investigations, how unwell they are and their accessibility to Royal Papworth Hospital. If you are waiting to attend the pulmonary vascular diseases service at Royal Papworth Hospital and wish to ask a question about your admission please contact as appropriate.
PVDU Ward Bookings Co-ordinator - 01223 638708
PH Nurse Queries - 01223 638826 (9.00 to 5.00 - answer phone out of hours)
24-hour specialist nurse contact – for urgent queries contact switchboard & ask to bleep 343, who will be happy to advise you.
If you are to be admitted to hospital for a few days you should bring your ordinary clothes with you as well as normal nightclothes and toiletries. Please remember to bring all medication that you are taking in its original, labelled container.
Several tests and procedures may need to be performed to assess the type and severity of pulmonary hypertension, including:
- Chest X-ray
- Lung function test - blowing test to assess the size and capacity of your lungs
- Walk test - a test to see how far you can walk in six minutes
- ECG - electrical (heart tracing)
- Echocardiogram - sonar scan of your heart
- Blood tests
- CT lung scan - to look at the structure of the lungs and blood vessels
- Right-heart catheterisation study - measures blood pressures within your heart and lungs
Some of these tests may already have been performed at your local hospital and will only be repeated if necessary. There may also be other procedures depending on individual circumstances. The results of the tests will be explained to you.
If we confirm a diagnosis of pulmonary hypertension, you will meet one of our pulmonary hypertension specialist nurses and be provided with written information from the Pulmonary Hypertension Association, for further information please follow the following link - Common questions following diagnosis | PHA
Our patients tell us that it is helpful to have someone with them when we discuss their diagnosis and proposed treatment options.
Follow up
After we have confirmed a diagnosis of pulmonary hypertension patients are usually reviewed on a regular basis (approximately every 3-6 months). We have developed outreach clinics in Coventry (Coventry University Hospitals Coventry & Warwickshire), Norwich (Norfolk and Norwich Hospital) and Plymouth (Derriford Hospital) to make it easier for some of our patients who live some distance from Royal Papworth Hospital. We also recommend that patients remain in close contact with their local medical team to ensure that day to day issues can be managed. We work closely with your GP and local hospital team to ensure you receive the best possible care.
Support group
We recommend the national support group Pulmonary Hypertension Association | PHA should you feel you need further information on Pulmonary Hypertension.
In addition to this Royal Papworth is looking for individuals who would like to join with us to set up a virtual Support Group for our patients with the support of the PVDU Team at the hospital.
This could be held on 'Teams' or 'Zoom' but we are open to all ideas. If you're
interested or would like to know more please email phn-tr.phnurses@nhs.net or call
us on 01223 638826.
Useful links
- Pulmonary Hypertension Association -UK - (External website)