Sunday, 16 October 2016

Last Thursday was the NICE meeting on radiotherapy. Ian Ireland very kindly volunteered to go as I could not, and Gemma Matthews went as well.
The meeting could only be observed, but they did mention the statement I had made on behalf of the BDS, statements from other patients and did they really have to assess safety as radiotherapy has been evaluated for so many other conditions already.
The committee members did not seem to have any special knowledge of Dupuytren's, we came across that at the Xiapex appraisal as well but there we had the chance to spend a few hours informing them of what the condition does and means for patients. That was a different group of people, and apparently they had not communicated. I discussed the condition with someone before the questionnaire was made, but that person was not in this committee either. Shame a decision is taken about a treatment for a condition that those who take the decision don't really know much about.
So now we have to wait for the decision.
On another note NICE has decided to hold the next Xiapex meeting, a week short of a year after the appeal meeting! Can't accuse them of rushing things.
I am still trying to get more scientists on our research page, found a mention of stem cell research in Wellington New Zealand which the researchers think might help us! I hope they are next on my research page. If they reply to my email.
Seeing many patients would like to discuss radiotherapy but most doctors tend to dismiss it, I have started making a list of doctors willing to discuss it as potential treatment and even refer for it. If anyone knows of such a doctor please let me know!

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