Monday, 6 February 2017

BSSH days over, now we need a secretariat

Well the BSSH days are over, it was a busy time but very good to be there. So many aspiring hand surgeons, such young people who are working hard to learn how to treat us, kudos to them all. That is dedication for you.
And I hope now a lot more know that their patients can approach our charity for some emotional help and reassurance. A big thank you to Ian Ireland for spending a whole Friday helping us, chatting to doctors and other exhibitors and spreading the word that there is a Dupuytren's charity.
And it was good to meet our trustee Mr Dominic Furniss who was there to share his expertise with the next generation.
I also met a few doctors who treat Dupuytren and who's name was not on our doctors and clinics page yet, that has been rectified!
So now forward with the charity, Gemma has sadly left us as the funding has been withdrawn, so ideally now we are looking for one or more volunteers to take over her secretariat job.
And if we could find patients willing to organise get-togethers in their area, that would be so good! We could have groups of patients meeting up and chatting about their experiences in different areas of the country. I am considering a 'North West England' patient group, maybe just to meet once or twice per year in a park or pub, for a chat and a lemonade.
Please Tweet Facebook email or get in touch any other way you can.

Monday, 16 January 2017

Getting ready

We are getting ready for the BSSH days! I have bought a conference table cloth and a table runner (and after that found out you can get special conference table cloths printed), I have designed and bought 200 new leaflets, (and a big thank you to Iain Reid who made the logo look better!). We have two volunteers, Ian Ireland for the Friday and Stephen Jones for the Saturday - I can't wait to meet them!
The trustee page on our website now has pictures of all trustees, and tells you who helps in what department.
I am getting somewhere designing an 'aftercare and physical therapy after surgery' leaflet - ok, the name will need shortening a bit. I need to take some hand pictures to show the exercises, but where you need two hands for the exercises I can't take a picture as well, so I will find some help for that.
The weather is atrocious, but fortunately that is not our responsibility. It just means more aches and pains for a lot of people, and especially for those with Ledderhose who may have trouble walking anyway- please be careful!

Thursday, 22 December 2016

NICE radiotherapy guidance

NICE has put the latest Radiotherapy guidelines on their website. It will remain available on the NHS for Dupuytren's but limited to clinics that can and will perform audits of the results. There are no safety concerns for the treatment, and repeat treatment is a possibility. So for now not much changes, and clinics that perform RT on the NHS should be able to continue doing so as long as the patient's CCG pays. We are happy with this decision!

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!