The reply from Parliament to our questions has been published and is very disappointing, it is just a few lines of generic text about Dupuytren’s and does not answer our questions. So the next step is that I will write to my MP, but after Christmas so the letter does not get lost over the holidays.
NICE published their preliminary decision, they are NOT inclined to recommend Xiapex for use on the NHS, and ask for reactions to this decision. We had 2 weeks for this, and collected as many patient comments as we could. The BSSH send in their reaction (they has not been present at the last meeting) and the distributors of Xiapex (Sobi) send in theirs. We also contacted an MP and he asked a questions in parliament, I approached a lot of newspapers and televsision news programs, which results in Gary doing an interview for a local newspaper and one for the local television.
Another bit of news is that clinical trials using Xiapex for Peyronie’s are starting in London.
On Tuesday 14th NICE held a second technology appraisal meeting, as thy felt they needed more information before making a decision. Again Anna was present, this time the doctors could not attend buut MrGiele managed to arrange a video conference so he coul;d listen in and answer all questions asked by the NICE committee.
On Monday 13th we had a meeting in London with 3 trustees and a communications company for some media training and to discuss website maintenance, the plan is to move the website to a different platform for easier maintenance.
We created a closed Facebook group, Dupuytrens Ledderhose and related conditions support, at the request of one of our Facebook friends. The group has a lot of followers who discuss their problems and what works or does not work for them.
NICE had the first technology appraisal meeting to assess Collagenase injections and compare them to other treatments. Anna Schurer was there as patient expert and we had appointed two surgeons, Mr C Bainbridge and Mr H Giele, who both attended as expert witnesses.
The AGM was held with 3 people present, the new treasurer was accepted and Judith resigned as head but stayed on as trustee, Anna took over as head of the charity. A few long term ideas were discussed, but no definite decisions made.
Last years financial statements have been sorted out, so we can start planning an AGM. After some emailing around it was decided to invite all active trustees and members 1st, and maybe organise another meeting with prospective trustees after that. A date was set for 13th April, a Sunday at 5pm. The financial statements and the agenda were emailed to those invited for their approval.
Anna Schurer had a meeting with another representative from Sobi, Simon Brophy, who is one of their scientific members of staff.
We produced an article for the Paget’s bone society about a suspected link between Paget’s and Dupuytren’s/ Peyronie’s, to be published in their newsletter later this year.