| British Dupuytren's Society needs help |
|
|
1
|
| 1
|
|
10/10/2013 12:22
Annesjoukje 
|
10/10/2013 12:22
Annesjoukje
|
British Dupuytren's Society needs help
We need your help!
You may be aware that the British Dupuytren's Society is involved in the 'scoping' of Xiapex by Nice ( national institute of clinical excellence). This means Nice is going to consider whether the NHS will offer Xiapex over the whole country or not. At the moment it is used on the NHS in some places, if Nice rejects the drug this will likely be stopped and everyone who wants it has to go private and pay.
As part of the process Nice wants to hear from Dupuytren's patients about what the disease means in their every day life, what effect treatment has had and if they have had surgery and Xiapex what the difference was and why they would opt for one rather than the other in the future.
We have been asked to appoint people willing to write a statement for Nice and maybe even come and talk to them ( it would be on July 15th 2014, not sure yet if in \Manchester or London)
Because none of our trustees have had Xiapex we need your help to volunteer to be one of the experts! We will obviously help and discuss everything.
We need to have names and signatures arrive at Nice offices by 23rd October, so we don't have much time.
If you think you might be able to help please contact me on anna@dupuytrens-society.org.uk
Please do get in touch!
Anna
|
|
|
|
|
10/11/2013 16:43
davidw
|
10/11/2013 16:43
davidw
|
Re: British Dupuytren's Society needs help
Hi Anna
Delighted to see yr post. Delighted to see someone is interested in Dupuytren in the UK. My experience to date has been poor with the NHS. Delighted that Xiaflex is being looked at seriously, as surely the cost of surgery, with surgeons, plus all the back up, must be even more than the cost of Xiaflex? Anyway, at least we shall seriously hear some more. I sent you an email directly and only hope you will get more response. I have a farmer friend who has had three open hand operations and is in a very bad way with his hands..and it has spread all over his body now. That is what I am afraid of. At least the Xiaflex offers a less intrusive form of cure.To date, because of the poor information at shop floor level (ie the Doctors surgery) I have done nothing. Which is of course another choice. But risk my DD getting much much worse with only amputation as the final resort. Another cost of course, for the NHS, if i have to go that way in the end. Better Xiaflex I reckon on the NHS. Please.
Thanks very much.
davidw
|
|
|
|
|
10/12/2013 14:39
Annesjoukje
|
10/12/2013 14:39
Annesjoukje
|
Re: British Dupuytren's Society needs help
Hi David
I have send you an email back, you and your friend may want to check out treatments such as Needle Aponeurotomy, less invasive, quicker recovery ( but probably also quicker recurrence). I hope you fine some useful information on our website. I have had a few positive responses, but can always use more!
|
|
|
|
|
10/14/2013 22:38
davidw
|
10/14/2013 22:38
davidw
|
Re: British Dupuytren's Society needs help
Hi Anna
Thanks very much for all that..
I've been in touch with Dr Chris Bainbridge from Derby and going to get a referral to him. He replied over the w/e. He seems the best in the UK, so that is great! And has experience on all treatments. My only concern is that messing around with DD, it can trigger it off in an aggressive stage spreading throughout yr hands and body. Hopefully he can advise on all that..
Thanks again, and i will pass on yr details to my friend and anyone else who has DD.
Good luck and let me know if i can do anything..
Kind regards
David
|
|
|
|
|
|
1
|
| 1
|
534 users online
Login
