Driving with Focal aware seizures

[NetballGhirl]

I have had epilepsy from childhood. Up to age 18 I took many complex partial (focal unaware in todays terms) seizures. Since the age of 18 I have only had some focal AWARE seizures at times (with high temperature and strong smells like chemicals being triggers). I am now 35, have been driving since 23 and seen myself as seizure free for over 17 years now. I haven't been on medication for about 15 years.

Because I told my GP the focal aware seizures have been triggered by high temperature they said to inform the DVLA. I have stopped driving for now. Can't get through for love nor money and still waiting on an email from them.

Does anyone know if they will sympathise considering I haven't lost consciousness since 2004? Or will they count it as seizures nonetheless and expect me not to drive until I am free from any seizure (including aware).

[Hidden]

I managed to get a medical form via the live chat on dvla.

[NetballGhirl in reply to Hidden]

Oh thats good to know. Thank you. I think when I tried live chat it said there was not enough staff to man the chats. I will try again at another time though. What do you think my chances are? 🤔

[Hidden]

Ah I dunno, the form just states when was your last seizure nothing else, mine were more like panic attacks when neurologist lowered my meds, I put a covering letter with my form saying I’m conscious and only happen at night, just had letter from them saying writing to neurologist for his opinion, I’m hoping he backs me up I’ve only been back driving 12 months 😢 but he insisted I lowered my meds 😤😤

[NetballGhirl]

It really is a nightmare. Thats where I struggle with the question "date of last seizure" guess I can only say last week and add that it was not a loss of consciousness; just as it hasn't been for 17 years. I keep telling myself at least I got to learn to drive and be able to drive and live a normal-ish life all that time. Still hurts thinking what if I don't drive again. Fingers crossed the neurologist backs you up since it was them lowering meds that caused it.

[EpilepsyAction1 Partner Epilepsy Action]

Hi. We know it is really hard to get in touch with DVLA at the moment. Matt's suggestion of a covering letter is a really good one. If you can't fit what you want to say into the form then at least you know you have told them the exact situation in a letter. Make sure it is clearly linked to the FEP1 with your contact details on it.

In the end it's going to be a discretionary decision between the DVLA medical team and your neurologist. We do know that DVLA rarely grant a licence to someone on this basis so I wouldn't want you to get your hopes up too far. But it's definitely worth applying.

Kind regards

Cherry

Epilepsy Action Helpline team

[NetballGhirl in reply to EpilepsyAction1]

I did finally manage to get through to DVLA. They confirmed that I won't be driving for 12 months even though I have not lost consciousness in 17 years. I surrendered my licence over the phone. I'm obviously devastated but there is nothing I can do about it. I would rather not put anyone at risk. Just need to wait and see what happens. I am now more concerned about my job. I work in a hospital laboratory as a biomedical scientist. My job involves operating complex machinery and there are hazards from chemical and mechanical hazards on top of the normal hazards. I regularly handle patient samples where urgent results are required. If I have a seizure where I lose consciousness it could delay those results and impact patient care. Especially if I am lone working which I do regularly. It could be a while before anyone notices and alerts anyone. Can they dismiss me on health and safety grounds? Or can reasonable adjustments be made so that I don't work alone?

I'm so scared of what will happen in future. I just hope there is a solution to allow me to keep doing my job.

🤞

[Angie140720]

Sorry to hear what is happening at the moment, it sounds like everything is snowballing! My experience of working in a hospital when I had a seizure was they refer to occupational health and put reasonable adjustments in place to help you keep working. They dont want to lose a skilled and valuable member of staff and try to help you keep working. If you have difficulty getting to work with transport and need a taxi, look at access to work to help with costs. Good luck, u hope it works out.

[NetballGhirl]

Thank you Angie. It really has snowballed. I'm glad to hear adjustments were made and occ health were helpful in your role. I think a lot of the issues come from lack of understanding of how epilepsy affects people in general and that its not so much the seizure that can be dangerous; it is what happens during it and how injuries can occur from the surroundings. It impacts on other people as well so that needs to be risk assessed. I will look up Access to Work. Thanks again! 😊

[EpilepsyAction1 Partner Epilepsy Action]

NetballGhirl

It's understandable you have anxieties about work. As Angie says, your employer should do a risk assessment and make any reasonable adjustments.

epilepsy.org.uk/info/employ...

employers.epilepsy.org.uk/

As well as looking at your seizures, it may help to look at equipment that maybe available to alert others if you have a seizure or become unwell. Most seizure alarms only work for tonic-clonic seizures or change in heart rate. In most cases, the company policy of what would happen if someone lone working faints or has an accident would also cover someone with epilepsy. For example, ‘regular check in’ process.

epilepsy.org.uk/info/daily-...

It may be helpful to make your employer and occupational health aware of our employers toolkit. It has information and templates to help employers support employees with epilepsy in the workplace employers.epilepsy.org.uk/

If we can be of any more help, please feel free to contact us again, either by email or the Epilepsy Action Helpline freephone 0808 800 5050. Our helpline is open Monday to Tuesday 8.30am until 7.00pm, Wednesday to Friday 8.30am until 4.30pm and Saturday 10.00am until 4.00pm.

Regards

Diane

[NetballGhirl in reply to EpilepsyAction1]

Thank you so much Diane for all the information. It would be good to talk about things with someone 😊

[Hidden]

well, I drove for many years before been diagnosed with focals with impaired awareness until the day I went TC good thing I was home in bed . If I’m you I wouldn’t do it until you are clear 💯 for a year or so.