Declaring your PH to the DVLA: An update on driving with pulmonary hypertension

Posted on August 2nd 2023

With pulmonary hypertension now a ‘declarable condition’, we know that it can be worrying when you tell the DVLA about your diagnosis. But in most cases, you can continue to drive – even while your case is assessed – as the PHA UK’s Shaun Clayton explains…

We’ve had a number of calls into the office over the past few months from people wanting to double check a number of things about the DVLA process. So, I wanted to pen an update about what they’re wanting to find out, how long the process can take, and importantly, when you can and cannot drive.

The initial process is still quite similar to what it was a few years ago, when we found out that those who have a diagnosis of PAH or CTEPH, and are under the care of a specialist centre, need to notify the DVLA of their condition. The only change has been that there is now a bespoke form (called PAH1) to declare this. This form was developed by the DVLA with the help of ourselves and the PH community.

When you’re completing this form, it is important to consider that the questions being asked are based upon how you are whilst driving, not at any other time of the day.

So, if it was to ask whether you have periods of dizziness, it is related to dizziness whilst driving – not, for example, if you had just hung out the washing or completed a walk test at clinic. The form is designed to capture whether you are safe to drive.

Once you have completed your PAH1 form, be sure to send it to the address specified – but, unless asked, do not send your driving licence along with it. As you’re about to read, you can be in for a long wait, and you may need it whilst waiting.

After sending the form the waiting game comes in. Anecdotally, I have been told that some people are still waiting for a response nine months after sending their original paper through.

Numerous reasons have been given for the delays, ranging from a COVID-19 backlog to awaiting letters from healthcare professionals. Whilst this time can feel like you’re in purgatory, not knowing which side the coin is going to land on, the information we have shows that an incredibly high proportion of people keep their licence.

Most keep them on what’s called a ‘three-year medical review’, meaning the licence will be reviewed again in three years. If this is you, please don’t despair as the vast majority of people with conditions similar to PH are placed on these licenses due to the unpredictable nature of the disease. Please seek comfort in this being the norm.

This brings me onto the most important part of my piece, what to do whilst you’re waiting. Well, first and foremost… unless you have been told otherwise by a medical professional, you can still drive!

If you are just waiting to hear from the DVLA then you are perfectly fine to drive as normal. The DVLA adopt an ‘innocent until found guilty’ approach to their reviews. When we spoke to them, they said they “only want to take drivers off the road who could pose a danger to others. We don’t want to take licenses”.

It doesn’t matter how long it takes for you to hear back from the DVLA whilst they are reviewing your case; you are fully entitled to drive.

TOP TIP: Whilst going through the process, you should be given the option to provide an email and telephone number. Make sure you provide these, as it means you should get emails and texts to keep you updated on the progress of your case.

Written by Shaun Clayton, Operations and Finance Director at the PHA UK, in July 2023