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So now forward with the charity, Gemma has sadly left us as the funding has been withdrawn, so ideally now we are looking for one or more volunteers to take over her secretariat job.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.

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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!

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! anna@dupuytrens-society.org.uk