Monday, 5 December 2016

News and another interesting article

Another good article has been published online, about the results of surgery for Dupuytren's.   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!

Wednesday, 23 November 2016

A new study on treatment results has been done

Things are happening in the world of Dupuytren's.
On 24th Nov we are attending the next NICE meeting, like a never ending story through the years! This one is post-appeal, to hear wat the Decision Support Unit has come up with, and yet again plead the patients case that surgery is not the be all and end all for every single patient, though it helps a lot of us (me included).

I have been in communication with Mr Jeremy Rodrigues, a doctor who has done an extensive study  assessing the results of Dupuytren's treatment, what influences it and how can we best  measure it. He has written a thesis on this, sadly it is not in the public domain yet. However the summary of his findings are on our research page!

In Belgium Dr Ilse DeGreef, maybe THE foremost Dupuytren surgeon of their country, has started a Dupuytren Fund to raise money for more research, she would like to banish this condition for good. So would we! More information will follow on our research page in the next few weeks I hope.

I will keep you updated on the NICE proceedings, there is movement in the Radiotherapy appraisal as well. Have a good day for now!

Saturday, 29 October 2016

Waiting for NICE and stem cell research in New Zealand

Well the weather has definitely turned cold and miserable, the sky in Wigan is grey, the air wet and cold. So pamper your hands feet and shoulders, they don't like this weather!
At the end of the November NICE will hold the next appraisal meeting on Xiapex (almost a year after the appeal, 6 days short!). I have applied for a place to observe, now waiting for approval to attend. You would think if they send you an invitation, you are already approved?
No news on the radiotherapy front, don't expect anything there till December at least.
In Wellington New Zealand the stem cell research is continuing, and the researchers have answered my email and may write a paragraph for our research page. Can't wait!
We have a link to our website on MyTherapyApp, a useful app that reminds people to take tablets, do their physiotherapy exercises and keep themselves as healthy as possible.
A lot of  hand surgeons have travelled to Buenos Aires for a conference, they are enjoying good lectures and round table discussions, good weather and more important the chance to get to know each other and discuss cases and treatments in an informal setting. These conferences are what makes international cooperation possible. I wish them all a good and informative time!
Gary just walked to the top of Mount Snowden, how is that for a post-radiotherapy for Ledderhose achievement! Well done Gary, we are all proud of you!

Sunday, 16 October 2016

Last Thursday was the NICE meeting on radiotherapy. Ian Ireland very kindly volunteered to go as I could not, and Gemma Matthews went as well.
The meeting could only be observed, but they did mention the statement I had made on behalf of the BDS, statements from other patients and did they really have to assess safety as radiotherapy has been evaluated for so many other conditions already.
The committee members did not seem to have any special knowledge of Dupuytren's, we came across that at the Xiapex appraisal as well but there we had the chance to spend a few hours informing them of what the condition does and means for patients. That was a different group of people, and apparently they had not communicated. I discussed the condition with someone before the questionnaire was made, but that person was not in this committee either. Shame a decision is taken about a treatment for a condition that those who take the decision don't really know much about.
So now we have to wait for the decision.
On another note NICE has decided to hold the next Xiapex meeting, a week short of a year after the appeal meeting! Can't accuse them of rushing things.
I am still trying to get more scientists on our research page, found a mention of stem cell research in Wellington New Zealand which the researchers think might help us! I hope they are next on my research page. If they reply to my email.
Seeing many patients would like to discuss radiotherapy but most doctors tend to dismiss it, I have started making a list of doctors willing to discuss it as potential treatment and even refer for it. If anyone knows of such a doctor please let me know!

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!

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!

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.