Driving and DVLA: I recently informed the... - Cure Parkinson's

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Driving and DVLA

steph02 profile image
23 Replies

I recently informed the DVLA of my condition atypical parkinsons received a reply within a few days in which they revoked my license with immediate effect. well I don't know what to do , it seams a ' fait accompli' on their part . for example how can I tell them that I my driving is not affected by my condition ( which i did on the form i sent them). They say that i have to produce medical evidence to say that it is safe for me to drive. well I am making an appointment with my GP. but I don't think that it will be very productive because I freeze a lot but this does not happen when i am in the car

or on my bicycle.I am very angry about this because the car is my lifeline. without it I am stuck in the house or have to take taxis eveywhere which is getting expensive. I suppose the only good thing about this situation is that I am getting fitter by bicycling every where that I can but i find the roads are quite dangerous, has anybody got any advice in how to proceed?

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steph02 profile image
steph02
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23 Replies
honeycombe3 profile image
honeycombe3

I wonder why you chose now to notify the DVLA? Did you have advice from any of the support agencies or your GP? I make a point of not contacting any statutory body whether by letter or filling in a form without getting someone from the afforementioned to look it over & to countersign if I think there might be any chance of a misunderstanding.

I have found the staff at the DVLA medical conditions department very helpful & I make a point of writing to thank them (it is all too easy to pick up a pen in anger or frustration). It is easy to forget in the heat of the moment that the procedures they must follow are not personal to our case: if one's condition appears on a list of those which may pose a threat to others then it has to be investigated.

As I am not sure about atypical PD I looked at your profile as well as reading your post & it seems to me that it may be down to good fortune that you have not 'frozen' while driving. I speak as a PwP who has been freezing for around 2 yrs (dxd 10yrs) also on 3yr driving licence due for renewal this year. I have not so far 'frozen' in the car but I have to acknowledge the possibility.

My good news is that last September I took the ApoGo challenge & started injections of Apomorphine which control my freezing. Perhaps you might explore this with your medical support team? For you there may be another piece of good news in that if you qualify for higher mobility allowance you do not have to buy in to the Motablilty scheme or run your own car - you can bank all the allowance & use it to pay for transport as needed. I know this is not ideal but it is realistic & might prevent an accident in the making.

steph02 profile image
steph02 in reply to honeycombe3

interesting I have heard of apomorphine at the moment i do not take any drugs for my condition , I shall certainly give it a try. I think that the freezing is a completely different mindset to driving is like stairs for me they stop any freezing episode. thanks for your comments, in the

meantime anyone want to buy my beloved morris minor convertible it is hard to drive.

Roseyuk profile image
Roseyuk in reply to honeycombe3

Hi Honeycomb,

My husband, has PD, diagnosed 4 year ago, last six months has seem significant, deterioration,

He did write to DVLC and checked he PD box, and has not heard anything from them as yet..although pesonally, I do not think he should drive..I am his carer ,and I take him to the GP and other appointments as

needed..

As his wife and carer, I am not able to cope with a lot of the care he needs.. As I have serious heart issues,,myself.

You mentioned in you're about help.. We have not been offered any help, from social services, as yet although his speech therapy nurse said he needs SS care and is also sending a dietician,as he does have problems swallowing..

Neither of which have we had any contact with.. Our GP is not much help..

I have tried searching, .. And come up against many obsticales..

Main one being we live on the Welsh border, although we have a Shropshire Pc ..

And I do not see any way I can contact the Welsh sicial services on their web site..

Ok .. That's our situation .. Right now.

Do you have any info, that would be helpful..

Thank you..:)

Pete-1 profile image
Pete-1 in reply to Roseyuk

Hi Roseyuk,

I'm a bit curious about the Shropshire Pc. What is a Shropshire Pc and how are you inhibited from searching and what problem is revealed when trying to contact the Welsh social services. I put welsh social services into Google, resulting in a number of links to the Welsh Social Services. The trouble here is that I don't really understand your problem. Perhaps a bit more detail or rephrasing may help?

Roseyuk profile image
Roseyuk in reply to Pete-1

Hi Pete

Well we have a Shropshire post code, but any services we may require.. Are supposed to be provided, by the Welsh, council, as that's who we pay our rates and water rate to.

I went onto the NHS web site to try to find our local social services,

But they ask to put you're post code in , to see if we are under the Shropshire SS care, but we are not.. We are under the care of Welsh

Social services,, but I could not find a contact number for their

Local SS, to ask for a home assessment, and a dieticians assessment.. Which we are supposed to have, been put into place

it seems most of our Parkinson care and facilities are in Shropshire,

Our PD nurse is in Shropshire, GP.. It's a somewhat crazy situation. To be honest,.. If we need paramedic , sometimes it's shropshire that turn up, sometimes the Welsh ..and I have been taken to 3 separate hospitals in the past because of this..

Shrewsbury , Telford and . Wrexham.. Which is rediculous..

As the Wrexham hospital ,does not liaise with the. English ones..

Very confusing to all concerned..

Hope you can understand now..

I'm still searching for tel numbers for Welsh social services that cover my area ..

Pete-1 profile image
Pete-1 in reply to Roseyuk

Good grief, what a carry-on. All this must drive you bonkers.

I can tell you about two experiences but I can't tell you how to proceed. My friend is 78 and was in the same situation as you. Instead of going to the doctor who probably would not support him he went to the licensing office and demanded a test to prove he could still drive and they obliged him and offered an appointment for a written test which would be followed by an actual driving test and gave him some information to study. He failed the written test. He studied some of the changes that have occurred in the laws in the last 50 years and tried again and passed but then failed the driving test (bad habits, who knew?). Finally he passed the test and they gave him back his license and he reevaluated his own ability and to my knowledge he has never driven since.

Myself, I started having side effects from Ropinarol and fell asleep at a couple of red lights so I took myself off the road , sold my old jeep and now walk, use a scooter or my wife / son or friends drive me. I really miss being able to drive. My freedom is diminished, my life is changed drastically. I take Amantadine now which counters the drowsiness but now I can not feel the pedals with my feet ( had to look to see where my foot was ) and my reaction time to the brake is too slow.

There are too many examples of older people crashing through drug store windows with the engine roaring at full throttle who later claimed the breaks did not work. We grew up driving, it gave us our independence but think back at the accident rate when the boomers first hit the streets (how many teenage friends did you loose?) what is it going to be like when we boomers turn 80? We all must consider and constantly test our own driving skills, but if you think there is low risk of causing a terrible accident then go ahead. I hope you are right. Probably not the advise you expected but reality sucks sometimes. I miss driving but I have enough trouble sleeping at night now I do not need remorse to keep me awake.

Hikoi profile image
Hikoi

Steph

I would ask the PUK worker to visit and help with advice re best way forward. That is part of their role.

steph02 profile image
steph02 in reply to Hikoi

What is A PUK worker and where do I find one.

Ceebs profile image
Ceebs in reply to steph02

Parkinson's UK have Information and Support Workers around the UK who you can meet up with for advice and information. Go to the Parkinson's UK website for the contact details for the one near you. Good luck.

M_rosew profile image
M_rosew

The day I was diagnosed, my neurologist told me it was a legal requirement (in UK) to notify DVLA at once. I did so and the licience was revoked. I phoned DVLA and was advised to reapply as soon as medication was relieving symptoms. The application is countersigned by your GP and your Specialist. I got a new licience eventually, but the gap left me less confident about driving, especially in heavy traffic.

Lifeline it may be, but you do need to be honest with yourself about your altered abilities, and the safety of other road users. It may be worth considering that not owning a car would save hundreds of pounds a year - and you could use all of it for taxi rides.

Good luck.

Jupeter profile image
Jupeter in reply to M_rosew

I endorse what M_r said. It is a legal requirement to notify the DVLA, I did so as soon as I was diagnosed 13 years ago. At that time I had very minor symptoms(slight ttremor in one hand) and they were slow to worsen. As soon as my GP had signed off my application I had my license re-issued but it now runs for 3 years only, then I have to re-apply. Only now do I think I am approaching the time when I may have to give it up.

It is absolutely essential to make sure that you can drive with the support of your GP. If you don't, then you are not insured and the ramifications, should an accident occur, are obvious.

As for support at home, I am about to write a post about Attendance Allowance benefits which you may not be aware of. Please read and see if it applies to you, so

many people are not taking advantage of this scheme.

PS, just noticed that others have made similar points, apologies for the duplication.

Reminds me of old comics routine:

I want to die like my grandfather

in his sleep

not screaming

like the other three people in the car he was driving

not funny ? it was at one time

marion11005 profile image
marion11005 in reply to

Funny--thanks for the laugh!

DianeJ profile image
DianeJ in reply to

Very funny!

arfitty profile image
arfitty in reply to

Yeah, it's funny. It always was. Some jokes live forever.

honeycombe3 profile image
honeycombe3

PUK is Parkinson's UK.

steph02 profile image
steph02 in reply to honeycombe3

thank you for your advice I will let you all know what the results are

paddyfields profile image
paddyfields

When you say revoked do you mean they have asked you to send in your licence? This is standard practice but until someone declares you unfit, i.e. they get an opinion from your neuro you can get a letter from the DVLA to say that so far you have a valid licence. For some reason they do not volunteer this information. If you ask for this letter you may find out if perhaps your GP has expressed an opinion without your knowing . Not all neuro's let alone GP's are experts in movement conditions. Did they ask you for your neuro's contact info.? You might consider having a test drive with A Motability centre or with the road safety arm of RoSPA

joesoap583 profile image
joesoap583

As it is a legal requirement to inform DVLA of the circumstance you are obliged to do so. HOWEVER, in my case they did not revoke - they wrote to my neuro to obtain formal advice about whether I was fit to drive. He responded to advise that in his opinion there was no problem, and so I continue to drive.

Some features of Parkinsons can render you immediately unfit to drive, so you may have rattled that cage by being too descriptive of your symptoms.

You can probably get the decision overturned if you can get your neuro to write a suitable letter.

Pete-1 profile image
Pete-1

Steph,

You must be truly pissed off about loosing your driving licence. I am in a similar situation. But in addition I have PD relate visual problems.

Anyway I just wanted to remind you (I'm sure you know this anyway) that if you do not notify the DVLA of a notifiable disease, not only would you be liable to a large fine but also you would invalidate your insurance.

So if you had an accident you would be liable for the fine for failure to notify the DVLA and a fine for driving without insurance or licence and damages to both vehicles and the worst thing would be a claim for personal injury which could swallow up every bit of your cash.

So you have done the right thing its just that it feels like the world has stopped spinning on its axis.

I imagine there are many worse drivers than you on the road with or without PD, seems very unfair. But remember, you have done the right thing

Roseyuk profile image
Roseyuk

Hi Steph

My husband also told the DVLC , about his PD, when his licence came up for renewal,

After a long wait, he received a letter from them, saying his licence has been revoked,.from now on

Until they get an in depth report of how his condition is affecting him..

They also said, that this is a lengthy process, and cannot guarantee he will get his licence back of course..

So be prepared, unfortunately, this would not be good news for yourself,

No matter what you say to the DVLC , they will not accept you're word, of how you're condition affects you..

Unfortunately I doubt my husband will be allowed to drive again .. He has only had PD for 4 years, but has deteriorated considerably, in 6 months..

Which, is taking its toll on me also, as I have to all the driving myself, and everything else in between, we are still waiting to be assessed, by the SS, and a dietician,

Seems theses sevices, are really so slow, to help..

I have heart problems, and the stress is making me ill.

But that's the reality of it all as far as I am concerned..

Life's unfair I guess for some. ..and that's how I feel, our retirement, is not how we planned

Good luck I hope you find an answer to you're present problems Steph

steph02 profile image
steph02

I am gathering together evidence that I can on fact drive safely ,Apparently the DVLA have not got in touch my GP o neurologist or parkinsons nurse so they have made assumptions based on what I told them. this is in fact harder to than it seems on face value as they require medical evidence to support my claim. and when you have been misdiagnosed for so long . I think I have PAFG.

What I have to convince them of is that I never freeze whist driving , I have enlisted the help of our local PUK worker and am writing to the parkinsons nurse. so will let you know what happens

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