My husband was recommended for Duodopa(very expensive) by 2 Consultants: after 8month wait and long complex application procedure, the PCT has turned him down.
I know there are people getting the treatment in Norfolk - we are in Suffolk.
Any helpful info? We will appeal- any tips?
What is duodopa? what does it do? thanks!
A permanent tube is inserted into the gut/lower bowel and a mixture of levodopa/carbidopa is delivered via a pump throughout the day. It is for advanced P's, and is said to even out on/off fluctuations a lot, and significantly improve life. You can look up lots more info on the net.
I have try Duodopa . I bet you have had reps telling you what a wonder drug it is when all it is L-dopa going in a peg .Your husband will have a big bag .
I could go no and on .It may get in your blood quicker but it sill got to get to your brain. SOME ONE MAKING A LOT OF MONEY.
Don't believe it
yours EXPORT.
Thanks for the input Export...you do not say where you are from. I guess not the UK. How was your Duodopa funded? Who paid? We are dependant on the NHS , and that is a postcode lottery. Yes of course you are right about someone making money - lots of it! And even if you dont like it, at least you have been able to try out Duodopa - we cant even get that far. It has had good results for a lot of people, from what I've read.
This is really upsetting. I am so sorry to read this Linden. I dont have any knowledge of what helps but i might try your local branch of PUK for support and local MP. Hope you get some answers here. Best wishes
Seems there is a lot available in the UK that we have no idea of in the US, I have not heard of it until now!
I have the duo-dopa pump i have had it for about 5 years now. When i 1st got it i was a completely different person. I had my pre parkies life back!!!. But as time went on my parkies progressed and the duo-dopa didnt work as well. But having said that i still dont freeze as often as i did before the duo-dopa and i havnt fallen for years. In the next couple of days im going into hospital for a few days observation so my consultant can work out the best way forward. I will keep you posted. xxx
very best wishes for your hospital stay and I hope things go well. It's really useful to hear some experience of Duodopa. My husband's consultant is appealing against the PCT's refusal, and is very committed to doing all he can to get it.
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