Another good article has been published online, about the results of surgery for Dupuytren's. http://onlinelibrary.wiley.com/doi/10.1002/14651858.CD010143.pub2/epdf The main writer is Mr J N Rodrigues, it is part of his thesis study.
On Wednesday 7th Dec we are hoping to have the next trustee meeting, it will be partly face to face and those who can't come will try to connect via Skype. Our Secretariat Gemma has arranged it all, and it must have been a lot of work! Mr David Ralph has kindly offered the use of his office for it. It will be good to meet some people face to face!
We had the next meeting with NICE about the use of Xiapex, now we are waiting for their next decision. I have told them that in the charities opinion Xiapex is the last hope for some patients, and therefore we do not want a blanket ban, we will be happy with limited guidance. But we just have to wait and see now. The manufacturers were well represented, and NICE had one hand surgeon (one of our trustees, but I am not sure if he represented us or the BSSH) on a conference call. Thank you Mr Henk Giele for taking the time to join the post-appeal meeting!
The decision on radiotherapy is due soon, we will keep you updated for that. For now, have a good day, wrap up warm if you go outside!
Keep up to date with all the news from the British Dupuytren's Society.
Showing posts with label trustee. Show all posts
Showing posts with label trustee. Show all posts
Monday, 5 December 2016
Tuesday, 13 September 2016
More good news on the trustee front
Dear all.
We are able to introduce two more trustees, Mr Richard Shaffer has agreed to join us and become our second radiation therapy expert and trustee; and Mr Dominic Furniss has become a trustee, his help will be invaluable as he is not only a Dupuytren's surgeon but he is principal investigator of the BSSH genetics of Dupuytren's disease consortium.
We are very lucky and extremely honoured to have the trustees we have, not just our two newest but all of them are very clever and dedicated people.
The next step is building up our patient member base, we need people with web skills, fundraising skills, designer skills, patient support skills, any skill or just good intention to help us support patients all over the country, and sometimes even further away.
Don't forget the focus group meeting in London at the end of this month (see our previous blog or our website or facebook page).
Finally the Oxford team is running another study, DISCO (don't start singing it!), for which they want people to fill in a questionnaire and send them a picture of their hands, to find out how Dupuytren's disease affects the community and the individual people. DISCO people!
We are able to introduce two more trustees, Mr Richard Shaffer has agreed to join us and become our second radiation therapy expert and trustee; and Mr Dominic Furniss has become a trustee, his help will be invaluable as he is not only a Dupuytren's surgeon but he is principal investigator of the BSSH genetics of Dupuytren's disease consortium.
We are very lucky and extremely honoured to have the trustees we have, not just our two newest but all of them are very clever and dedicated people.
The next step is building up our patient member base, we need people with web skills, fundraising skills, designer skills, patient support skills, any skill or just good intention to help us support patients all over the country, and sometimes even further away.
Don't forget the focus group meeting in London at the end of this month (see our previous blog or our website or facebook page).
Finally the Oxford team is running another study, DISCO (don't start singing it!), for which they want people to fill in a questionnaire and send them a picture of their hands, to find out how Dupuytren's disease affects the community and the individual people. DISCO people!
Monday, 5 September 2016
A new trustee and NICE proposed guidelines for radiotherapy
It would seem it was to quick last time, I can now introduce another trustee. Mr Mike Hayton BSc(hons) MBChB, FRCS (Trauma and Orth), FFSEM(UK) has joined us. He is a Dupuytren's expert, a consultant surgeon who works in Manchester and Wrightington Hospital and has a world of experience. he performs all surgical treatments possible for Dupuytren's including Xiapex and PNF, and has been active in the NICE appraisal as well as presenting at and attending conferences, teaching lectures and workshops and in general doing all he can for Dupuytren's patients.
And with luck there will be more soon! We also need active patient members, people to help with patient and doctors contacts, fundraising, bring in new ideas for the charity, webdesign, whatever your expertise is!
We need anyone who feels strongly about treatment being available on the NHS to consider responding to NICE' proposed guidelines for radiotherapy for Dupuytren's. You have to register, and read the proposed guidelines then give your comments, which can be very technical about a certain point or just general about the whole paper stating what you think, why radiotherapy is an important options for patients and why you feel the NHS should offer it at the right stage of the disease. Especially those who have had radiotherapy either private or via the NHS are well suited to give their experiences and opinion.
Or if you are against all this you can also comment, with reasons!
https://www.nice.org.uk/guidance/indevelopment/GID-IPG10022/consultation/html-content
The new page is progressing well, though all this trustee welcoming is slowing it down a bit. Not to worry, we shall get there.
More soon, when we have news again! Look after yourselves and visit us on Facebook or Twitter.
And with luck there will be more soon! We also need active patient members, people to help with patient and doctors contacts, fundraising, bring in new ideas for the charity, webdesign, whatever your expertise is!
We need anyone who feels strongly about treatment being available on the NHS to consider responding to NICE' proposed guidelines for radiotherapy for Dupuytren's. You have to register, and read the proposed guidelines then give your comments, which can be very technical about a certain point or just general about the whole paper stating what you think, why radiotherapy is an important options for patients and why you feel the NHS should offer it at the right stage of the disease. Especially those who have had radiotherapy either private or via the NHS are well suited to give their experiences and opinion.
Or if you are against all this you can also comment, with reasons!
https://www.nice.org.uk/guidance/indevelopment/GID-IPG10022/consultation/html-content
The new page is progressing well, though all this trustee welcoming is slowing it down a bit. Not to worry, we shall get there.
More soon, when we have news again! Look after yourselves and visit us on Facebook or Twitter.
Tuesday, 16 August 2016
New trustees
Great news today! We have two new trustees, to help our charity.
Dr George Flanagan, podiatrist surgeon with a special interest in Ledderhose has agreed to join on the Ledderhose side of things, and will be working closely with Gary. Dr Flanagan works in Blackpool NHS hospital, and in private practice in Fylde, and is sure to be an asset to our charity.
Mr David Ralph is joining us on the Peyronie's side. He has already worked with Birgir and Mr John Glees on the recent awareness campaign, and has agreed to become a permanent trustee. He has published extensively on Peyronie's and has a lot of experience treating men with the condition. We are extremely lucky to have him on board.
Welcome gentlemen, thank you so much for your efforts to help in fighting these diseases.
Dr George Flanagan, podiatrist surgeon with a special interest in Ledderhose has agreed to join on the Ledderhose side of things, and will be working closely with Gary. Dr Flanagan works in Blackpool NHS hospital, and in private practice in Fylde, and is sure to be an asset to our charity.
Mr David Ralph is joining us on the Peyronie's side. He has already worked with Birgir and Mr John Glees on the recent awareness campaign, and has agreed to become a permanent trustee. He has published extensively on Peyronie's and has a lot of experience treating men with the condition. We are extremely lucky to have him on board.
Welcome gentlemen, thank you so much for your efforts to help in fighting these diseases.
New trustees
Great news today! We have two new trustees, to help our charity.
Dr George Flanagan, podiatrist surgeon with a special interest in Ledderhose has agreed to join on the Ledderhose side of things, and will be working closely with Gary. Dr Flanagan works in Blackpool NHS hospital, and in private practice in Fylde, and is sure to be an asset to our charity.
Mr David Ralph is joining us on the Peyronie's side. He has already worked with Birgir and Mr John Glees on the recent awareness campaign, and has agreed to become a permanent trustee. He has published extensively on Peyronie's and has a lot of experience treating men with the condition. We are extremely lucky to have him on board.
Welcome gentlemen, thank you so much for your efforts to help in fighting these diseases.
Dr George Flanagan, podiatrist surgeon with a special interest in Ledderhose has agreed to join on the Ledderhose side of things, and will be working closely with Gary. Dr Flanagan works in Blackpool NHS hospital, and in private practice in Fylde, and is sure to be an asset to our charity.
Mr David Ralph is joining us on the Peyronie's side. He has already worked with Birgir and Mr John Glees on the recent awareness campaign, and has agreed to become a permanent trustee. He has published extensively on Peyronie's and has a lot of experience treating men with the condition. We are extremely lucky to have him on board.
Welcome gentlemen, thank you so much for your efforts to help in fighting these diseases.
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