PATIENT PATHWAY

New patient journey

Your referral to the Scottish Pulmonary Vascular Unit (SPVU) will have been made by your local hospital consultant, usually a Respiratory, Cardiology or Rheumatology consultant. They have made this referral because they suspect you may have Pulmonary Arterial Hypertension (PAH). The time between your referral letter being received by the SPVU and an appointment being given is less than 12 weeks but you will often receive your appointment within 4 weeks.

our appointment requires you to come to The Golden Jubilee National Hospital in Glasgow to meet the team. New referrals are seen weekly, on a Wednesday afternoon, and you should expect your clinic visit to last at least 2 hours.​

You will have an echocardiogram and chest x-ray before seeing the SPVU doctor. An echocardiogram is when ultrasound is used to display a picture of the heart at work. You will be asked to lie on your left side and a jelly like substance is placed onto your skin. The technician moves a device, a bit like a microphone, called a transducer over your chest at various angles. The echo looks at your heart and can estimate the blood pressure in the pulmonary arteries as well as the volume of blood being pumped from the heart with each beat.

You may also be asked to perform a test called spirometry. This test provides information about the amount of air a person’s lungs can hold and how effectively they work. It is important to establish if increased breathlessness over time is due to PAH or another lung condition.​

Once these tests are complete, you will be seen by a Pulmonary Vascular doctor who will ask lots of questions about your past and current health as well as physically examine you. A family member may be present if you wish.​

Following the consultation, one of three things will happen:

1. You will be informed that we do not think further investigations are appropriate for you and a full explanation given. A letter explaining this in detail will be sent back to your local hospital consultant with our recommendations for future management.​

2. You will be informed that although we believe you do not have PAH at present, there is a possibility that you are at risk of developing it in the future. A follow up appointment may be given, further tests organised, or recommendations for monitoring your health will be sent to your local hospital consultant.​

3. You will be informed that we believe you may have a condition called Pulmonary Arterial Hypertension, and further tests are required to confirm this diagnosis.

If you require further test you will be introduced to one of the specialist nurses within the unit. The nurse will talk to you about arranging a 4 day admission (3 nights stay) to the Golden Jubilee National Hospital so a complete assessment of you and your symptoms can be carried out. A booklet describing the admission is available here.

There will be an opportunity at this point for you and your family to ask questions. The nurse will supply you with their direct contact details which you can call if you have any questions or concerns before your admission. A diagnosis of PAH can only be made at the end of this hospital admission.

On the day of your admission you will be asked to attend Level 2 West in the Golden Jubilee National Hospital at 11am. There may not be a bed ready for you at this time however we ask you come in at this time so you can be assessed by the SPVU doctor and we can get your tests started.

You will undergo all or some of the following tests:

Blood tests​

Chest X –Ray shows a good picture of your lungs and the outline of both your heart and pulmonary arteries.

Echocardiograph is a repeat of the test you had at clinic and although it differs slightly from the previous one the process is the same as before.

12 Lead Electrocardiogram (ECG) records the electrical activity of the heart. Small electrodes are placed on your chest which picks up this electrical activity.

High – Resolution Computerised Tomography scanning (HRCT scan) uses X- rays which provide detailed images of your lungs. The HRCT is particularly useful for finding common abnormalities in the lungs.

Cardiac Magnetic Resonance Imaging (CMRI) uses a strong magnetic field to create images of tissues, organs and other structures inside the body.

Pulmonary Function Tests (PFTS) are a variety of tests which assess your breathing in a number of ways. The tests provide information about the amount of air a person’s lung can hold and how effectively they work. It is important to establish if increased breathlessness over time is due to Pulmonary Arterial Hypertension (PAH) or other lung conditions.

6 Minute Walk Test assesses the distance you can walk on the flat in 6 minutes. Your heart rate and oxygen levels are monitored and recorded throughout the test via a small finger probe. We ask you to wear comfortable clothing and footwear for this test.

Cardiopulmonary Exercise Testing (CPET) is where you are asked to ride an exercise bike while breathing through a mouthpiece and wearing a nose clip. You heart rate is monitored by small electrodes positioned on your chest.

Computerised Tomography Pulmonary Angiogram (CTPA Scanning). This tells us whether there are any clots in the lung blood vessels or whether previous clots have left scarring.

Ventilation – perfusion scanning (VQ scan) is used to detect blood clots and will tell the doctor about the evenness of airflow and blood flow to the lungs.

Right Heart Catheter Test/ Pulmonary Angiogram is when a fine catheter is passed through a sheath (inserted into a vein in your neck under local anaesthetic) into your bloodstream. The catheter flows with your blood into the chambers of the heart and measures blood pressure. The sheath is removed from your neck immediately after the procedure.

The consultant will see you on the ward round on Thursday afternoon (after your tests are complete) and explain the findings. A family member or friend is invited to be present and you are free to ask any questions. If you are diagnosed with pulmonary hypertension you may be started on medication to treat the condition before you leave hospital. Discharge home is usually Thursday evening at between 5 and 6pm. However if you require ambulance transport to get home then you will stay until the Friday.

Clinic follow-up 
You will be reviewed at the SPVU clinic on an ongoing basis to suit your care needs. Initially this is every three months. However care will eventually be shared with your local consultant when your visit to the SPVU clinic will reduce to six monthly. At your review appointment you will be asked to perform a six minute walk distance (the distance you can walk on the flat at your own pace within a 6 minute time period), to complete quality of life questionnaires (the Hospital Anxiety and Depression Score and the Emphasis 10) and a blood test will be taken. You will then be seen by an SPVU doctor who will ask you questions about your symptoms and examine you physically. It would be helpful for the medical staff if you could bring an up to date list of your current medication.

It is a good idea to write down any symptoms or problems you have been having since your last clinic visit. Don’t be afraid to ask questions. You are welcome to bring a member of your family/friend to your appointment, although we would appreciate if you kept this to a maximum of two people.

Our clinics are very busy and you may be required to wait. We do however work hard to try and keep your wait time to a minimum. Should you wish to speak with a member of the nursing staff in private please let the nurses or receptionist know. If you are a patient on oxygen, we have oxygen concentrators available within our clinic setting.

We also have outreach clinics in Aberdeen Royal Infirmary and the Royal Infirmary Edinburgh. The clinic in Aberdeen is held in Clinic C eight times per year. The clinic in Edinburgh is held in Clinic 2 every month.

Should you require ambulance transport to bring you to your appointment please contact the Ambulance Service directly on 0300-123-1236 (if you live within NHS Lothian however the number to contact is now 0131 446 4500). The SPVU has no control over what time the ambulance can pick up after your appointment and you may have to wait a while on your return journey.

Your follow up appointments at the SPVU clinic are very important and it is vital that you attend. If you cannot attend please call the unit secretary on 0141 951 5497 to cancel so we can provide another appointment which suits you better. Please attend at the time stated on your appointment letter as arriving early does not mean you will be taken early.

What to do if you are feeling unwell?

If you are feeling unwell you should contact your GP in the first instance. Your GP has contact details for the SPVU should they need to speak to one of the doctors or nurses that work in the unit.

Out-of-hours you should contact NHS 24 (call 111) or the emergency services. If you are admitted to your local hospital please inform the medical team looking after you that you are a patient of the SPVU. Show them your alert card so they know how to contact us for advice on your care.

During the hours of 8am to 5pm Monday to Friday you can contact the SPVU nurses for information and advice regarding your PAH and treatment.

The nurses can be contacted on the following numbers:

Agnes Crozier 0141 951 5621
Karon Carson 0141 951 5771

Rachel Thomson 0141 951 5623

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