We have a decision! It has taken almost 7 months, but NICE have decided that the appeal should be upheald. Not for the whole of the Dupuytren's community, they still prefer patients to have PNF but for those who are not suitable we can argue the case again. https://www.nice.org.uk/guidance/GID-TAG364/documents/appeal-decision So back to appraisal it is.
Anyone who wants to know what the decision was based on, this document gives the arguments and reasoning. And for someone interested in the whole process: the documents can be found here: https://www.nice.org.uk/guidance/indevelopment/gid-tag364/documents
On another note the Pulvertaft Hand Centre in Derby would like to know what patients feel about splinting, especially after PNF. https://www.surveymonkey.co.uk/r/splintingfordupuytrens It is a short survey, so won't take much of your time! Go ahead and do it.
The Peyronie's campaign has reached a lot of people and countries, and we are now considering how to build on that. Our Thunderclap reached the 100 supporters-limit, thank you to everyone who supported! We will keep you informed of any other projects we start, for now it is back to appraisal on Xiapex and hoping NICE makes the right decision on Radiotherapy. Exciting times for Dupuytren's patients.
Keep up to date with all the news from the British Dupuytren's Society.
Showing posts with label appeal. Show all posts
Showing posts with label appeal. Show all posts
Tuesday, 28 June 2016
Monday, 5 October 2015
Appeal
The appeal to NICE has been send (twice, the first one was rejected because I also used the email address they send instead of only the website submission- so don't supply an appeals email address if that should not be used!) and apparently if you submit in two different ways it cancels each other out. So I submitted again, only via the website this time.
Now I started looking at writing a bit about Ledderhose for the book Wolfgang Wach is planning, a completely different challenge, and the two-week deadline he gave is already past but I told him the NICE appeal came first. I need to calculate p-values for this! I really can't remember how to do that, just remember from college 30 years ago that p < 0.05 is significant. So that will be a challenge and a half, or maybe a bit more even. At least I have 2 weeks off work, so I have the time to look into it.
Louise Banks is doing a really good job for us, she has lots of ideas and knows how to give out press releases and look for funding. She is a valuable member of our charity. Together we have decided to look into a new logo for the BDS, it has been on the agenda for a while but we really want to do something about it now. So if anyone has artistic talents and can draw hand with contracture and foot with nodule in a simple but clear way, let me know or send a picture! I tried to draw someting but it looked more like a cloud in the sky. Or something Freddy Kruger had gotten hold off.
Keep your hands and feet warm with this nasty wet weather folks! Love
Anna
Sunday, 20 September 2015
NICE or not?
Well as of four days ago NICE does not recommend Xiapex unless in trial settings, patients who've already started on it can continue the treatment but others are condemned to having surgery as far as the nice people at NICE are concerned.
We can appeal, but seeing they did not listen to the patients point of view the first time, will they listen a second time? I don't know.
It is something to take into consideration, and all trustees must decide what they want, then we can come to a united decision. I hope to hear from them soon. Anna
Subscribe to:
Posts (Atom)