Survey results: MS and driving

Survey results: MS and driving. #MSBlog #MSResearch

“The results of this survey are clear. It looks as if we are not doing a very good job telling MSers that they should notify the DVLA or equivalent driving authority. This is something that will need to be added to our To Do list with newly diagnosed MSers. I am amazed at how often MS impacts on your ability to drive.”


  1. The current system in the UK where a neurologist has to validate your application to renew a 3 year licence is not very practical – it overburdens the neurologists with admin and (in my case anyway, because the form wasn’t completed by my neuro!) led to me having to spend a whole day being assessed at a mobility centre (accompanied, in case I wasn’t able to drive home through losing my licence). That was 4 years ago and I am still competent to drive a manual car. However I think there are MSers who have never notified DVLA of their diagnosis, because of ignorance of the regulations.
  2. Safety on the roads is paramount. You should never risk your lie, the lives of your family or any other road user.
  3. I migrated from a manual car to an automatic, then to hand controls as I was losing confidence in my legs.
  4. My driving range also decreased so that I didn’t overtire myself.
  5. I have self limited myself to driving to the local shops and local GP only and I rely on community transport for anything other than this. My neuro knows this and says he trusts me to make a judgment call on whether I am well enough to drive when I feel well enough.
  6. I was RR at the time of diagnosis, and learnt about the DVLA requirement from the site mentioned above at the time.
  7. I am happy that I am left responsible for my driving, but quite amazed.
  8. I would never drive when I don’t feel able, but I think some people would do so.
  9. My DLA Motorbilty car has proved a lifeline to me, and I don’t want it taken away.
  10. I didn’t know that the DMV needed to know about my MS until I went to get a license in a new state. They asked about my health, and when I told them about the MS, they required me to get a note from my neuro saying that I had not lost consciousness in the past.
  11. Neurologist didn’t inform me at dx, nurse mentioned in passing at a clinic appt….just as well or I wouldn’t have known and was taking lessons at the time.
  12. Still taking lessons, have yet to inform DVLA, although I know I have too. Hoping to get car adapted via motability scheme.
  13. Neurologists should tell patients but in the middle of telling a hell of a lot of other bad things I am not surprised that driving gets missed. 
  14. Rebuild existing or buy a new car.. what it boils down to for me right now.. family members drive me around for now. It affects my independence.
  15. I have a dl but because the dr’s won’t have them revoked. I don’t drive more than 3 miles.
  16. The medical reviews are intrusive and not necessarily appropriate, onerous and frequently involve additional costs and excessive medical appointments. ie lots of gps are overly cautious in signing off on smeone being okay to drive and will tick that an OT assessment is also required. Not only is this over kill, the cost is borne by the patient/driver, which is anything from $500-$700 to get an OT to do this assessment. In many instances this is then asked for every year, irrespective of whether the person’s condition has altered since the previous year.
  17. Another less timid gp will sign off, after checking reflexes and – amazing – asking the person their opinion, without the additional palaver being necessary.
  18. Knowing many people with ms, I am aware that they self-manage and that medical probes do not credit this.
  19. My left leg is the weakest, so I drive an automatic so that there are no problems.
  20. We are tested every year on our ability to drive.I live in a small town & input drive locally now & certainly not if I’m tired.
  21. As a support volunteer for the MS Society I always tell newly diagnosed people about informing DVLA as even if the Neurologist or MS Nurse has informed them at time of diagnosis, the individual may not have taken it in as there is so much to absorb at this time. 
  22. Having initially surrendered my licence I have successfully reapplied for my licence after five years and now have a three year licence. So far I have had a three year one from 2009-2012 and then again now from 2012-2015. I will have to continue to go through this process every three years relying on medical evidence to support my case.
  23. I do not place myself in situations where I would have to negotiate unfamiliar terrain or do any night driving. In my favor, I drive daily through out my community and I haven’t been in any accidents nor do I have people honking at me. I am relaxed and comfortable with my driving skills even when I have a patrol officer following behind me for a couple of blocks.
  24. My delightful ex-Neurologist actually used the letter from the DVLA telling me that I was now being put into the medical category to confirm that he diagnosed me with RRMS. So they knew before I did! (Well, I knew, but couldn’t get anyone to confirm anything…….). 
  25. To be fair, he had said that I might need to think about driving changes when the maybe diagnosis was CIS (he also suggested that I might like to consider changing to an automatic, but no, I didn’t have MS, and no, though maybe through exclusion I did have CIS, he really didn’t think I would go on to develop MS). And seeing as my initial tentative diagnosis was a brain tumour, I had already thought about driving, and checked out the DVLA conditions.
  26. The DVLA were amongst the first organisations I contacted when getting diagnosed. Their staff were really great, encouraging and taking their time to explain the procedure for checking me out. I don’t have any restriction on my license, and I never use it if not well enough (that applies to everyone diagnosed with a “condition” or not). But other MSers seem to have had very different experiences, with limitations on their licenses that seem draconian and illogical/unfair.
  27. I avoid driving at night and on days when I feel my MS is worse.
  28. I am worried about losing my licence and ability to drive. I know hand controls are available but not sure if i would be able to sustain the arm position because my arms become weak. I also know left accelerator is an option but my left is not very flexible. So am worried that i will lose my independence.

About the author

Prof G

Professor of Neurology, Barts & The London. MS & Preventive Neurology thinker, blogger, runner, vegetable gardener, husband, father, cook and wine & food lover.

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