Wednesday, 14 September 2016

New webpage

We've gone live with our new webpage! It was a lot of work, and I owe a massive 'Thanks' to all the scientists who responded to my emails or my request on Researchgate, and especially those who submitted a written piece. Have a look and let us know what you think! http://dupuytrens-society.org.uk/ongoing-research/

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!

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.

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.

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.

Sunday, 24 July 2016

July 2016

We had a trustee meeting last week, everyone agreed the Peyronie's campaign had been a success and the message went further than we had expected. Now to decide whether to do the same thing for Dupuytren's and Ledderhose. Dupuytren's has had quite a bit of attention in the media with first Pfizer, then Sobi doing awareness campaigns. Ledderhose is the forgotten condition that gets hidden away in shoes and nobody notices it.
 
The BSSH together with the JLA (James Lind Alliance) have a survey they would like patients in Britain with hand or wrist conditions to take (or those that care for a patient with hand or wrist problems) Check this page for more information and links to the survey. http://www.bssh.ac.uk/patients/bssh_james_lind_alliance_partnership.aspx  
 
We have started writing to researchers hoping to put together a webpage on research being done at the moment. Ideally every team would write a few lines for us explaining their research and what they are hoping to achieve. After 2 days I had 3 replies already, so far so good. Only 15 more replies to come I hope!
 
We are still waiting for NICE to make their final decision on Xiapex after it went back to the appraisal committee, and for a different group from NICE to make a decision about radiotherapy. Let's hope both decisions are patient friendly and allow access to the treatments the patients want!

Keep well and look after yourself folks!

Tuesday, 28 June 2016

Nice appeal decision!!

We have a decision! It has taken almost 7 months, but NICE have decided that the appeal should be upheald. Not for the whole of the Dupuytren's community, they still prefer patients to have PNF but for those who are not suitable we can argue the case again. https://www.nice.org.uk/guidance/GID-TAG364/documents/appeal-decision So back to appraisal it is.
Anyone who wants to know what the decision was based on, this document gives the arguments and reasoning. And for someone interested in the whole process: the documents can be found here: https://www.nice.org.uk/guidance/indevelopment/gid-tag364/documents

On another note the Pulvertaft Hand Centre in Derby would like to know what patients feel about splinting, especially after PNF. https://www.surveymonkey.co.uk/r/splintingfordupuytrens  It is a short survey, so won't take much of your time! Go ahead and do it.

The Peyronie's campaign has reached a lot of people and countries, and we are now considering how to build on that. Our Thunderclap reached the 100 supporters-limit, thank you to everyone who supported! We will keep you informed of any other projects we start, for now it is back to appraisal on Xiapex and hoping NICE makes the right decision on Radiotherapy. Exciting times for Dupuytren's patients.