MDS and the DVLA

[nancyiow]

Hello All,

My name is nancy and I live on the Isle of Wight. I am 75 and was diagnosed in mid november 2012 as suffering from MDS. At the time, my platelet count was 40, but has since dropped to below 10 and I am nwow being treated under the wait and see regime, with blood testsevery ten days and platelet transfusions to boost the platelet count. Two bone marrow biopsies gave me an abnormal blast reading of 2.5% and 5% respectively, therefore i have not yet reached the required 10% of abnormal blasts to qualify for chemotherapy. However, the abnormal cells reading in the blood film is higher, which is confounding the consultant.

Due to the lowering of the platelet count, I was advised to contact the dvla regarding my foitness to drive. I have been through the DVLA website with a fine toothcomb, and read the medical guidance report for GPs from cover to cover, but MDS does not figure in that at all. I am a retired health [professional(nursing) therefore i am aware that driving with too low a platelet count poses a risk to both myself and others, but I am reluctant to surrender my license: a. because I amj the main driver for the family - my husband had a stroke in 2008 and has a blue badge for reduced mobility. and b) I understand that following chemotherapy, the platelet levels should be boosted to somewhere below the original normal levels, but certainly high enough for mje to be able to drive again without risk.

My question to you all is what have you done about driving with a low platelet count? I woulkd be grateful if you copuld let me know so that I can make some sort of decision. I would be happy to discuss it with my GP and just act accordingly.

Cheers,

NancyIOW

[chris]

Dear Nancy

Firstly, I am sorry to hear of your MDS diagnosis. You have an MDS Centre of Excellence quite nearby (though across the Solent!) in Bournemouth so I hope your consultant on the IOW is able to take any queries about unusual blood film results to Dr Sally Killick?

I can see you are in a dilemma - weighing up your real practical need to continue driving - against advice to contact the DVLA and your concerns about the potential risk to others and yourself if you continue to drive. As somebody who has seen several elderly drivers continuing to drive - even in the face of pleading from family members that they are a danger to others - I feel it is your duty to be honest with yourself if your condition might put somebody else's child/parent etc at risk. Sorry, but this is something I feel very strongly about - not just elderly or infirm drivers but those who drink/ take drugs and drive, people who drive at ridiculous speeds in residential roads and people who drive while on their mobile phone and while texting!!! A car is a lethal weapon in the wrong hands.

I am not sure that your GP would be the expert in this, given the rare nature of MDS. I think you would need to go back to whoever first suggested you contact the DVLA and ask exactly what the risks are IN YOUR SPECIFIC CASE. For example, have you yet experienced any nosebleeds or other haemorrhaging that would lead to fainting/blackouts/loss of concentration while driving? And, if that is not the case, can they quantify the risk of that happening? If there have so far been no incidents, I would think that would stand in your favour. Just because MDS/low platelets is not listed on the DVLA site should not exempt you from contacting them to describe your illness and check that they consider you are safe to carry on. If DVLA says that you should not drive, there is always the possibility that your condition may improve / respond to treatment and you could then apply to have your licence returned.

By the way, blasts below 5% are generally thought of as being in the normal range and there is a good chance that they may not progress to a level whereby chemotherapy is used. However, there are now some drugs which have been found to improve platelet counts (I am assuming your other blood counts are OK?). Not sure if / when they will be available in the UK. Have a look at the latest MDS Newsletter which is now available on this site.

I wish you well in coming to your decision.

Best wishes

Chris