Hello Ellie.
I went to Dr L because he was the only one I found who did NA when I searched the net some years ago when my Dupuytrens first started. When I eventually needed treatment I saw a consultant privately here and mentioned NA to him. I got the usual block and was told I would need an operation but not yet, only when the DC had progessed further. When I was considered ready for the op I was told that I had a choice of paying or, going back to my GP to be referred to the NHS. There was the usual long waiting list so I opted for private. I asked again for alternatives but was told there were none. The following day I thought about how I would be out of action for weeks if not months and cancelled the op. I decided to take the plunge and contacted Dr L sending photo's of my hand. I went to Paris in June and had the NA.
I am going again this month to have my other hand done.
Am I satisfied? Well, I can use my hand again and am no longer sticking my finger up my nose when I wash my face. Bliss. I am not only trying to get a refund from the NHS for the last NA and to fund my next but also to get the Department of health to send some of our surgeons for training.

Thanks so much for the information. I am inclined to agree with you about getting someone experienced to do the procedure. However, I am still appalled at how we are being ignored in our attempts to get NA up and running here. From what I have read this is not the only area NICE are failing in (new breast cancer drugs scandal springs to mind) Thank God for those French doctors who care about curing people rather than making money.

Not many people have DC in the UK????

Arguments:

NICE states clearly that DC is 'common' yet most other govts say it is 'rare'. The use of the word 'common' reflects the fact that DC originated in Europe therefore Europeans have a higher rate of DC.

Contact NICE and ask what 'common' means then use the govt's own words against them. :-)

If I remember correctly the Society for Hand Surgery in Britian also refers to DC as common in their literature but you'll have to check....and...maybe even a visit to recent and past British studies on DC might produce more results of doctors calling DC in Britian 'common' - providing independent corroboration.

Perhaps you could even show that using percentages from other countries is erroneous because statistics on the DC burden to the health care system using info from other countries because those populations are not reflective of European Stats. :-)

Please forgive my choppy writing...I'm running out the door and don't have time to edit.
Frances

Hi again Marjorie,

I've had a chance to read the post about mapping the gene for DC to Chromozone 16q. Wow, a giant step forward for DC sufferers. Their article can also be used to forward your arguments for NA.

Example:

'... Although its cause is not completely understood, it is believed that the disease results from a defect in the Body's normal wound healing response.' Healing RESPONSE being the reason why NA can be more helpful then surgery because surgery is more traumatic.

The article also states, '...Efforts are now underway to identify the gene itself. Once that is accomplished the next step would be to develop a beter, less invasive method of treating it.' This is a recognition less invasive techniques are the better option for DC.

The article goes on to explain what they mean and why,
'Standard treatment for the disease is a surgical procedure known as fasciectomy, in which segments of the palmar fascia are removed. Complications with surgery, however, are common, Nystrom said, as Dupuytren's tends to envelop adjacent structures as well, particularly the small nerves of the hands and fingers.'

Interestingly this article states that complications with surgery are *COMMON*. I would like to know what they base that statement on....then post it here for the whole world to read because complications with NA do not seem to be common at all...at least they are not being posted here....other then relapse...but then if the disease has been positively identified as genetic....then relapse is going to occur in all cases - it's only a matter of what degree. But I digress....at this moment.... I think there is enough here for a patient to argue for the right to CHOICE of treatment..... It's not up to the gov't to choose surgery for us particularly when wound healing is a problem.

Anyways, thos were my two cents....hope they helped. I'm swamped at work at the moment... otherwise I'd joyfully study all the people they used in their study. It's interesting to see how the big boys work.

Take care and God Bless,

Frances

Agreed. It was my impression that they were refering to traditional surgery not NA when they were listed complications.

Frances