Wintertime started

Well, today winter time has started, it is dark and cold, and I bet you are all feeling it in your hands and feet. Keep warm, don't be ashamed to wear mittens if gloves won't work anymore! For me men's gloves medium to large has been a good options for a long time, as womes gloves always have thin fingers, and bendy ones won't fit in them.

Two weeks ago almost we had our first training day in London, Gary, Henry Orton and I were there. The morning was media training, how to answer questions and try to get your message accross, the afternoon was about Wordpress for when we move the website over. A second day is planned but no date yet.

The 14th October was another morning in Manchester for the next NICE appraisal meeting, this was an extra one but fortunately I happened to have that week off work so I could attend. The team wanted extra information before making their decision. I hope they decide in favour of patients being able to have the Collagenase injections on the NHS if they have a suitable contracture.

My computer problem with my virus scanner not allowing me to access the website is fixed, after the latest AVG free version update I can now keep the program running while I manage the site. This means I can spend a bit more time on it, so I have made some updates on the History page and of course the Doctors and Clinics page, websites and doctors addresses seem to change weekly.

We are thinking about a new logo, the present one was borrowed from the International Dupuytren's Society and can apparently in some countries or societies be seen as rude, a hand with one finger bend down. We must all be rude people, as many of us go through life like that! But anyway, I had seen a picture I really liked, enquired about buying it and got an email back saying we could buy the oicture but not the copyright, so we would not be able to use  it for logo or modify it. No use to us, so back to the drawing board for that one. I will keep you informed.

Gary has been busy with his surveys and is setting up a section on his blog for patients life stories, please feel free to check it out. http://ledderhose.blogspot.co.uk/ 

Anyone who is good at sketching or drawing feel free to have a go at making a logo, ideally somethng with a hand (with one or two bend fingers and a visible cord) and a foot with a lump. Not much to ask is it?

Anna

Meetings

Two days ago I met up with Mark Bell, a representative of Sobi who will be marketing Xiapex in Europe and Asia. He seemed nice, keen and had good knowledge of Dupuytren's and the other conditions Xiapex is being trialled or considered for. I am happy to say we have a Peyronie's patient on our side now, as Mark asked if we support patients with PD and for some reason I feel better letting men discuss that amongst themselves.

Sobi is a smaller company than Pfizer but no less committed, and the have some good ideas. They will keep us informed of trial results and published articles and can help finding surgeons who use Collagenase injections if a patient send us a query where to fine one.

 

Then yesterday was the next meeting with Nice, to discuss the finalised scope for Xiapex and the forthcoming multi-technology appraisal, what they want from us in the way of information and help, how they are going about searching for articles and calculating the improved QALY of patients, that kind of thing. I was impressed with the way everyone at Nice now understood the disease, and the meeting was fruitful.

 

We also send a letter to Bapras  http://www.bapras.org.uk/ last week asking them to review and update the information on their website about Dupuytren's. At the moment it states 'Surgery is the only treatment available for Dupuytren’s Contracture' and we would like that adjusting to mention the  different treatments that are available. We shall see what happens.

 

It's been a busy week, but it was constructive. Anna

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.