Driving - a guide if you have spina bifida and hydrocephalus

Many people with spina bifida or hydrocephalus learn to drive and continue driving for many years without any difficulty at all. But for some, the effect of the conditions on their ability to process information, remember and plan their actions can make driving a challenge.

Driving can look simple, but is a highly complex activity, involving, at the same time:

  • Visual spatial skills (for example, judging distances and speed) and coordination
  • Concentration
  • Integrating information from several sources at once
  • Planning ahead
  • Decision making and navigation skills

Many of these factors can be challenging for people with hydrocephalus, or with Chiari II (associated with open spina bifida). Keeping up concentration can be especially challenging.

Getting started

Getting assessed

If you are a new driver, you first need to apply for a provisional licence from the DVLA and mention any medical conditions. They may wish to check with your GP before issuing a licence. If you have the higher mobility rate of DLA, or PIP, then you can learn to drive from 16 (usual age 17).

You will need to take a driving theory test prior to getting your licence. This will include perceptual questions. If this is an area of difficulty, it is advised that you take this test before having practical lessons.

Mobility centres

There are 17 of these around the country and they can provide advice and assessments for people wanting to drive or needing adaptations to their cars in order to drive. Some of them also have a track where you can try a car out. The mobility centre forum can offer advice via their freephone number 0800 5593636. You will need to have your provisional licence before you can have an assessment. Find out more here.

Adaptations for cars

There are many adaptations that can assist people to drive, from swivel seats through to hand controls. Your local mobility centre can advise, or the charity Rica has leaflets on this, and equipment to help get a wheelchair into a car: www.rica.org.uk/content/car-controls or T: 0207 74272460.

Motability scheme

If you have the higher rate of DLA or PIP for mobility then you should be eligible for the Motability scheme, whereby you can use your allowance to purchase a vehicle suitable for your needs. In some cases, they can help with the costs of driving lessons.

The Motability scheme also covers the cost of insurance, so can be a good way for young or inexperienced drivers to get on the road. However, if you don’t need a lot of adaptations, have been driving for a number of years, or regularly drive long distances, buying a car on the open market might be cheaper. (Motability charges for excess mileage.)

Contact Motability on 0300 456 4566 or see the Disability Rights information.

Sometimes, despite everything, driving is not possible. If you need to use public transport, there are laws in place to ensure that assistance is provided to help you travel. See the government website on travel for buses, trains, ships and planes.

DVLA - licence information for disabled drivers

All drivers are responsible for making sure they are fit and well enough to drive safely, and for letting DVLA know of any health issues that might affect your driving.

When you apply for your first licence you will need to tell DVLA of any health conditions. If you develop medical conditions or your condition changes (for example, you need a shunt revision) once you have your licence, you will also need to let DVLA know.

People with hydrocephalus, spinal problems, epilepsy or cognitive problems must tell DVLA. People with obstructive sleep apnoea must tell DVLA if it affects their driving.

There is a list of notifiable conditions on the GOV.UK website and a link from each condition to the right form to complete.

DVLA will use the information you give to decide whether you can have or keep a licence, and if so, whether you need any adaptations to your car as a condition for driving. They may ask for more information from your doctors.

DVLA will let you know if you need to surrender your licence for a fixed time, for example after shunt surgery. At the end of this time, you need to reapply for your licence as long as your doctor says you are well enough to drive.

There is a £1,000 fine for not informing DVLA of relevant conditions or changes, and you may find your insurance doesn’t cover you in the event of an accident. If your doctor advises you to stop driving, you need to surrender your licence.

For more information, click here.

Need more help?

If you need to speak with one of Shine’s specialist advisers about spina bifida or hydrocephalus, call us on 01733 555988 or click here to email us.

Our office hours are Monday to Friday, 9am to 5pm. We aim to respond to all enquiries as quickly as possible!

 
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