AGM 2015

On 28th December we had our trustee AGM, this year we had a good show, with 6 people joining in the Skype conversation (although we kept loosing at least one).

We discussed a lot, not in the least asking Birgir Gislason to become our trustee for the Peyronie's side. He has been helping us for a while, so it was time we made it official.

A Peyronie's awareness campaign is planned for next year, with Birgir and Dr John Glees very enthousiastic about how they can help. Thank you to both!

Gemma is now our secretariat for the next 6 months, Annemarie remains treasurer. No other changes in the line-up.

We had some good suggestions about how the charity can evolve, and the minutes and financial report wil be put on the website (as soon as I can work out how to do so, lol)

The website is now completely on Wordpress, there are some teething problems but on the whole it has gone very smooth. The IDS had their AGM on 29th December, Anna attended (by telephone conference)

A Scottish MP Martyn Day has asked the Secretary of State for Work and Pensions, what the timescale is for reaching a decision on the proposals to add Dupuytren's Contracture to the list of industrial injuries disablement benefit diseases. The answer is a bit disappointing: The proposal to add Dupuytren’s Contracture is still under consideration and a decision on this will be made in due course.

Still I will email the MP and express our gratitude for him standing up for Dupuytren's patients.

Letter to my MP

 Two month almost since my last blog! In that time NICE has considered all comments we send them (and the BSSH send, and other people as well I hope) and they will make their decision on 9th February. We have approached two MP's, the first one asked a written question and the ministers reply had nothing to do with the question asked, so then I approached my MP about the fact that patients would like a choice of surgery or no surgery, and in Wales and Scotland the collagenase injections have been approved. Yvonne Fovargue MP has passed our concerns on to the Secretary of State for Health and the Shadow Health Team, so we'll see what that achieves.

 

Gary has been on local television and in his local papers promoting awareness of Ledderhose and Dupuytren's and radiotherapy for these conditions.

 

Xiapex has been given European approval for use in Peyronie's, seeing that multiple injections are needed I can't see it being available on the NHS any time soon..

 

The IDS has had their AGM, that means it will be time for ours soon. As the last one was a complete wash-out, I am not looking forward to this years meeting. But I suppose we have to do it. Sometime soon. So please see this as advance warning, anyone who would like to join in (I may try Skype this year, or Google Hangout again) please let me know.