Since coming across this page http://dupuytrens.org/DupPDFs/dirlist.htm of the Dupuytren's Foundation I have spend a lot of time updating my Dupuytren's library. I now have over 1,400 articles and my personal Mendeley account is full. Fortunately they gave us a year free group account for the charity, and that contains 2 GB so far, and can go up to 100 GB so I can continue collecting for a while!

On a sad note: our chairperson Judith has decided to step down for personal reasons, so now we are down to 2 trustees. We have put feelers out to see if some of the people who helped us when we started the charity would be willing to step in, if not there will be a public appeal. For now we will wait a few weeks for any replies, but any volunteers who would like to be involved please contact us through the website or facebook.

NICE have to decided to go ahead with the appraisal of Xiapex, which means they are going to decide if it should be available on the NHS or not. So far they have not taken any of our comments or suggestions on board, but we'll keep trying. They don't expect to decide anything before 2015, so don't get excited folks! lol.

We have a beautiful picture on our website, courtesy of Megan Lindquist. Lovely cheerful waving hands. Dupuytren's patients are a good bunch.

That's it in a nutshell for our news, I will keep you all informed if anything else happens.

Oh and Wigan won the Challenge Cup! YEAH!!!

NICE scoping

So last week we got an email from NICE ( National Institue of Clinical Excellence) to ask us to participate in a scoping for Xiapex. We knew it was coming, but not when.
Scoping, for those of us not well up on these term, means NICE is considering wether to consider Xiapex for funding through the NHS in England ( the second considering  is called appraisal, do we allow it or not). As a ( self proclaimed) patient organisation the invited us to take part.
So I had to contact works manager (in my week off) and ask for Monday 25th March the afternoon off, as it is in Manchester so I could get there ( live in Wigan, work in Haydock). Once that was approved I started going through the documents they send, 8 docs so far, they want our comments on the proposed scoping, did they get the condition right, the patient group, the reason why some people want treatment, why would you not want surgery with a 3 months recovery period, do we discriminate against any groups in the population if we allow Xiapex only for people with a palpable cord, why would we think Xiapex has anything positive to offer,  that kind of questions.
So my 1st week off  goes to the BDS, apart from yesterday's spa day ( was lovely, but why do they think you want a spa day so just a salad for lunch is ok? My stomach was waiting for chips!)
Maybe my second week off will include some more me-time? We'll see.