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So now forward with the charity, Gemma has sadly left us as the funding has been withdrawn, so ideally now we are looking for one or more volunteers to take over her secretariat job.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

Well we have finally finished our reply to the BSSH about radiotherapy,  that letter will be on it's way early next week. It has been a job and a half finding the right articles, but at last we managed.

And just as you think the website is complete for now- I noticed the bit on Garrod's pads and dorsal nodules was missing! So I have re-written that, and emailed it to our webmaster, I hope he'll be able to add it in soon.

What next? For a while I have been thinking about wriiting a more in-depth piece on the way fibroma's form, but that would be a big job, and as the scientists constantly change their minds and find new things, would need to be kept up to date at least monthly. So I'm not sure yet, but it may come.

My shoulders ( both sides now) are still playing up, I feel like I should be an expert on frozen shoulders but if someone asks how do you know if you've got a frozen shoulder I don't have an answer, as my two have developed so differently. Really the main thing was pain, stiffening up, and with both I noticed I started saying 'Ow' when stretching the arm forward or sideways to grab something. Not very specific is it?  That's Dupuytren's, no two cases are the same.

I reads omething this week that Boris Karloff may have had Dupuytren's, and Bill Owen as well? Could not find any conformation, so if anyone had compelling pictured of their hands I'd love to see them.

June already, another month gone

Well I am still ironing out little crinkles in the new website, but so far have had a lot of positive responses. It does look good, there is a search function now, it's easy to navigate.. Definitely worth all the work and the hassle.

I have put together a reply to the BSSH, British hand surgeons are very much against radiotherapy and it would be great if we could change their minds only slightly. Most GP's look on the BSSH guidelines for what to do if a patient presents with Dupuytren's, and if that states to wait till it's bad enough for surgery, can you blame the GP? Well yes, maybe, as they should be aware of the NICE guidelines for radiotherapy of course, but GP's have a busy life and can't know or remember everything about every disease and it's treatment options. So we aim to give a bit of a helping hand, even if the hand may be a bit knobbly!

Gary is busy settling into his new role as father, he seems to be enjoying it and doing a good job.

Meanwhile I keep collecting interesting articles I find online about Dupuytren's, it's genetics, related conditions, anything I can find that doesnot just give an overview of what we already know really. I have over 300 articles now, all neatly organised in Mendeley. That is a very useful program.

So I keep doing little bits, and it seems like not a lot, then suddenly we make a jump forwards, like getting the website ready.

Time for some sunshine now, after working all week I am still white and everyone else is tanned!

Anna

Nice Scoping meeting

Well, the Nice scoping meeting is behind us.

The main discussion points were:
- what treatment can Xiapex realistically be compared with? We decided only fascietomy ( surgery) as that is the only treatment routinely offered in England
- Which people can get Dupuytren's and is there a group in those patients that should be treated different? We decided anyone can get it though some groups are more likely to than others ( eg northern European, Serb and Croats, people from Haiti - I did not know that one!) but every case should be judged on it's own accord by patient and doctor, you can't say this group needs surgery more often and that group is better with injections)

I had the feeling a lot of it was educating the people from Nice, they were baffled by the answers now and then ( And how soon does it recur? Well that varies per patient.  How many operations are needed? Varies per patient. So if it starts young it as always more aggressive? No, just in most patients, there are lucky ones.) And they were shocked when I mentioned that amputation is generally seen as the final option for cases that don't respond to surgery, they had not come across that one in their research). 

Now Nice has to make a summary report, which will go back to the Department of  Health.

One of the BSSH surgeons asked for guidelines as he thought that could really help patients ( when should Xiapex be considered ratherthan only surgery) but Nice said this was just an appraisal meeting, so only to see if theycan decide on funding or not funding, not to form guidelines. Maybe in years to come?

On a more positive note I have heard that radiotherapy is available on the NHS in Exeter, done by a Mr Goodman.

Anna

working on the wbesite still...

It is time for an update on what is happening. 
Over the last few weeks I have spend most of my time downloading pages from the BDS website, editing the text and the hyperlinks, only to find out  a few days later that all the hyperlinks edits I made had not been saved, even if I did them in Word 2007. Still don't know why. So I had to do it all again in OpenOffice.
That seems to have worked, and I have now emailed the page to a very nice person who is putting together a new website on his domain for us.
We are not sure yet if we are going to move the tag from 1 site to the other so we can keep the name the same, or if the new site will have a slightly different name. That only needs to be decided once the new site is set up with all links working etcetera.
I have been in contact with Wolfgang Wach from the International Dupuytren's Society, we still need to reply to the BSSH on their stance against radiotherapy. We have not been able to find some of the artciles they quote, even the radiologists we asked have not found them. And it's not easy arguing about the conclusions in a text you have not read. I will give it another try later on.
Healthwise my frozen shoulder is playing up still, I am covered in bruises from the physiotherapy and even my physio does not understand why my shoulder still won't move normal after all the treatment I had. I would not recommend frozen shoulders to anyone!