Congenital Heart Disease, driving and me!

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Congenital Heart Disease, driving and me!

Learning to drive and then using a car to get from A to B allows anyone with a single ventricle heart an opportunity to access places they want to visit in as independent a way as possible. Even when their energy levels are low.

The following information will help you to understand any rules and or support that goes alongside driving when you have just half a heart.

Support to be able to drive

Funding a car and paying for driving lessons can be a worry for people with a complex heart condition.  Applying for Personal Independence Payment, PIP, can help with mobility payments. Here is a link to LHM’s PIP application information https://www.lhm.org.uk/pip/

You can also seek funding for driving lessons from organisations like the Family Fund who have a special fund that supports 18 to 24-year olds towards independence. https://www.familyfund.org.uk/help-for-18-24-year-olds

The Rules

You have a legal obligation to let the DVLA know if you have congenital heart disease.

You can do this online:

Congenital heart disease and driving GOV.UK (www.gov.uk) at the following link. Unfortunately, congenital heart disease is not recognised as a condition that is accepted to discuss online at the DVLA so it will direct you to the H1 form, you can complete this electronically, BUT this must  be printed and posted back to the DVLA.

Remember you can discuss this with your cardiologist or nurse specialist too.

  • If you have palpitations that make you feel unwell, if they make you lightheaded, dizzy, or faint then you also need to let the DVLA know.
  • Palpitations can be common in single ventricle patients and usually  resolve by 

       themselves; however, some single ventricle patients need medication to help control the         

       palpitations 

  • The DVLA want to make sure you are fit & well enough to drive a car, and you will not become unwell and cause injury or harm to yourself or others
  • Contact your cardiac team if you are having issues as they can support you with this, by writing, emailing, or phoning the DVLA to clarify your medical status.
  • Your cardiac team may also advise you to stop driving for a brief period if you have become unwell, or they are worried about your ability to drive.
  • Often the DVLA will initially revoke your license in the first instance of you reporting these symptoms, they then gather evidence to hopefully support the decision to allow you to drive again.
  • This process can take a little while, which can be distressing for you. However, intended to keep you safe.

 Further advice and guidance on the DVLA website

Driver and Vehicle Licensing Agency – GOV.UK (www.gov.uk)

The Somerville Heart Foundation website

Somerville Heart Foundation DVLA: Updated H1 Form for CHD (sfhearts.org.uk)

The British Heart Foundation website

Driving with a heart condition | British Heart Foundation (bhf.org.uk)

This information was collated by:

Lorna Carruthers SVH Adult service Lead LHM 2022