Driving advice when awaiting formal diagnosis

[Jess2023]

Hello
Could some experienced members help advise on the driving situation for me. My husband who is 52 has been diagnosed with a progressive neurological condition after the memory assessment process, however is awaiting pet scan and a 2nd mri, this is due to his consultant’s uncertainty about a diagnosis. She is querying wether he has a Fronto Temporal dementia or Alzheimer’s. He has been referred for a driving assessment and was informally advised by a memory practitioner to not drive until his assessment takes place. Waiting for this assessment has taken over 7 weeks so far and the consultant did not mention driving when she recently saw him. I’m worried about his insurance and what the protocol is at the point where we don’t have a formal diagnosis as yet and are awaiting his driving assessment. He drives literally just two or three times a week in a 5 mile radius to our home for a hobby.
Any advice or experience with this would be much appreciated.

 

[Sue741215]

Hi @Jess2023. I am so sorry to hear of your husband's condition at such a young age. I don't have a definitive answer for you I'm afraid. After my husband's memory assessment the memory clinic said he should not drive pending assessment based on the results of the cognitive tests. He had the previous week driven 500 miles with me when we were on holiday without incident so we were both shocked and surprised when he subsequently failed his driving assessment. However it was only when he stopped driving me around that I realised how tense I had been when being driven by him in case something happened.

He had been diagnosed with dementia like changes in his brain about 18months previously and like you , I had taken the view that he was ok to drive as no formal diagnosis. In fact I let him drive all the time so he would keep up the skill as long as possible and all seemed to be ok. Some will say I should not have let him continue to drive as he could kill someone but as an experienced driver I felt he was better than most and was driving more cautiously. Not sure I was right but on the other hand I don't think I could have stopped him - it was hard enough when he was actually told to stop and i ended up taking his car away to stop him driving. He had not been deemed to have no capacity for decisions so in the end it was his responsibility. Similarly although you can try to persuade him not to drive you may not be able to stop him. Even if you reported him to DVLA it would probably take some time for them to revoke his licence.

You don't say if your husband is willing to give up driving - I guess not as he is still driving so it might not be possible to do anything in the short term One thing I could suggest is contacting the driving assessment centre directly as he has had a referral - I managed to get an appointment quite quickly (a couple of weeks though I think this is unusual), by saying we could attend at short notice if someone cancelled.

It may help you to know that my husband absolutely loved driving and I never thought he would be reconciled to not driving but within a couple of months he was happy for me to drive and now says how much he enjoys going out in the car.

Not sure if any of this is helpful except to say that there are lots of us who have faced your dilemma - obviously the safest thing would be for him to stop driving pending assessment but it is not always possible to achieve this. Like much in caring for those with neurological difficulties, you can only do your best - there is often no definitive answer.

Hopefully you will get a diagnosis soon and your husband will get the best treatment available.

 

[Jess2023]

Hi @Jess2023. I am so sorry to hear of your husband's condition at such a young age. I don't have a definitive answer for you I'm afraid. After my husband's memory assessment the memory clinic said he should not drive pending assessment based on the results of the cognitive tests. He had the previous week driven 500 miles with me when we were on holiday without incident so we were both shocked and surprised when he subsequently failed his driving assessment. However it was only when he stopped driving me around that I realised how tense I had been when being driven by him in case something happened.

He had been diagnosed with dementia like changes in his brain about 18months previously and like you , I had taken the view that he was ok to drive as no formal diagnosis. In fact I let him drive all the time so he would keep up the skill as long as possible and all seemed to be ok. Some will say I should not have let him continue to drive as he could kill someone but as an experienced driver I felt he was better than most and was driving more cautiously. Not sure I was right but on the other hand I don't think I could have stopped him - it was hard enough when he was actually told to stop and i ended up taking his car away to stop him driving. He had not been deemed to have no capacity for decisions so in the end it was his responsibility. Similarly although you can try to persuade him not to drive you may not be able to stop him. Even if you reported him to DVLA it would probably take some time for them to revoke his licence.

You don't say if your husband is willing to give up driving - I guess not as he is still driving so it might not be possible to do anything in the short term One thing I could suggest is contacting the driving assessment centre directly as he has had a referral - I managed to get an appointment quite quickly (a couple of weeks though I think this is unusual), by saying we could attend at short notice if someone cancelled.

It may help you to know that my husband absolutely loved driving and I never thought he would be reconciled to not driving but within a couple of months he was happy for me to drive and now says how much he enjoys going out in the car.

Not sure if any of this is helpful except to say that there are lots of us who have faced your dilemma - obviously the safest thing would be for him to stop driving pending assessment but it is not always possible to achieve this. Like much in caring for those with neurological difficulties, you can only do your best - there is often no definitive answer.

Hopefully you will get a diagnosis soon and your husband will get the best treatment available.

Gosh this is so helpful thank you for replying. Your right he doesn’t want to give up driving, he cannot work anymore so this would be another blow to him. He loves driving and whilst I don’t feel unsafe at all I do worry that due to his neurological decline there maybe more going on that would make sense if he stops right away. Thanks for your advice I’ll ring and see if we can get a cancellation for the driving assessment. Thanks for your kind words.

 

[SeaSwallow]

Hello @Jess2023 It is always so hard waiting for a definitive diagnosis, it can seem to take for ever. But although you do not have a formal diagnosis I think that you should let his insurance company know the position.
It is my understanding that even if your husband was only informally advised not to drive that he would not be insured if he was to have an accident prior to the assessment.

 

[Jessbow]

He has been referred for a driving assessment and was informally advised by a memory practitioner to not drive until his assessment takes place.

what does ''informally advised'' mean?Either he was advised to not drive, or he wasnt.
I think he could end up in deep do-do if he was in an accident

sadly many sufferers have no insight into their condition, who would want to give up driving?

 

[Jess2023]

Hello @Jess2023 It is always so hard waiting for a definitive diagnosis, it can seem to take for ever. But although you do not have a formal diagnosis I think that you should let his insurance company know the position.
It is my understanding that even if your husband was only informally advised not to drive that he would not be insured if he was to have an accident prior to the assessment.

Thank you for your insight that’s so helpful.

 

[Jess2023]

He has been referred for a driving assessment and was informally advised by a memory practitioner to not drive until his assessment takes place.

what does ''informally advised'' mean?Either he was advised to not drive, or he wasnt.
I think he could end up in deep do-do if he was in an accident

sadly many sufferers have no insight into their condition, who would want to give up driving?

Exactly what I thought regarding the use of “informally” , we have had no follow up from the memory service to explore that and this wasn’t from the Consultant. Thank you for your advice.

 

[canary]

Being advised "informally" not to drive means that the advice has not come from the DVLA, but even so, if a doctor, or other health professional, has advised that he should not drive this still counts and seaswallow is right - it would mean that he is not actually insured.
Doctors tend to take the "I will say this only once" route on such matters and the consultant probably thought - well hes already been advised not to drive.....

Try and get that assessment done as soon as possible and in the meantime come up with some excuses for him not to drive if he wont accept that he has to stop (at least until the assessment)

 

[Jess2023]

Being advised "informally" not to drive means that the advice has not come from the DVLA, but even so, if a doctor, or other health professional, has advised that he should not drive this still counts and seaswallow is right - it would mean that he is not actually insured.
Doctors tend to take the "I will say this only once" route on such matters and the consultant probably thought - well hes already been advised not to drive.....

Try and get that assessment done as soon as possible and in the meantime come up with some excuses for him not to drive if he wont accept that he has to stop (at least until the assessment)

I am so grateful for your advice as amongst the worries his situation has brought this is another add on, I will contact to see when this driving assessment is scheduled for and in meantime speak to his insurers. Thank you