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.

After a week relaxing without internet in Wales ( I did drop some BDS leaflets at the local Spire hospital in Abergele, seeing I had rented a cottage 2 minutes walk away) it is now time to start sorting the charities fnances. Accessing the bank account- I found the gadget back that I needed but hd to get it synchronised again, then struggled with the website, but finally I managed to arrange payment to the IDS for the last 2 years contribution. And I registered the BDS with HMRC online to try get tax refund on donations from taxpayers. That was a morning and a half work.

 

After that I fixed a bird feeding table that had fallen over in the winds- screwdrivers are really not good for those with Dupuytren's, my hands hurt! I hope the birds appreciate my sacrifice. And have now bought an electric screwdriver for the next time.

 

The editorial we were writing for Sobi is finished, now me have to write an article for the Paget's society's newsletter about a possible link between Paget's and Dupuytren's or Peyronie's. Another few weeks work there I think. But it raises awareness, and I am all for that. And if any researcher were to see it and decide to investigate a bit further I will be very happy.

 

Still no plans for our AGM, as we need to be able to present a financial staement, and for that we need to have the bank statements all in one place. So that will take more time.

But it will happen. Coffee-o'clock now I think, and maybe a little piece of shortbread with it?

2014 starts

So we have survived Christmas and the New Year. We had a lot of visitors over ( fortunately they all stayed at my mothers 2 streets away, as I worked all except the bank holidays). So not much time for charity work, but it was a family time anyway.

And now I just tidied a big pile of post and other paperwork, and found 2 letters that I should have send off  6 weeks ago for the BDS, not surprising I have not heard back from the companies! I will send them off tomorrow, see what happens then.

The International Dupuytren's Society have had their AGM, ours is overdue but I decided it will have to wait till the bank account is sorted out (the change of address letter is one of the two I forgot to post). I need a secretary!

Not much has happened Dupuytren's wise, no exciting new treatment developments I'm afraid. we did get approached by the NIRH about some research they do, and read the paperwork and answered their questions. This is also about deciding whether Collagenase is a good development or not.

The editorial we are doing has been written, now I am just trying to find some good pictures in the right resolution to illustrate the disease. Slowly we are getting through all the paperwork ( ok, would have gone faster if those letters had been posted on time..)

A happy New Year to all still, and keep in touch via the website contact or Facebook!

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

Going through the website

This weekend I have so far spend around 9 hours going through the BDS website, finding spelling and grammar mistakes ( even though we checked and proof-read many times before publishing anything) and trying to find some clipart or medical pictures to liven the pages of text up a bit.  I have made three concept front page dropdown menus, can't fit everything under 6 headings and we don't have room for more! I hope at some stage all trustees will agree on the new outlay.

 

This website re-organisation is going to last a while I am afraid, I just hope it will be worth it in the end.

 

I also ordered a sweatshirt, coffee mug and a few bumper stickers from CafePress. I need a new sweatshirt, a new mug for at work ( mugs have the nasty habit of breaking when someone drops them)  and the bumperstickers will go on the cars of unsuspecting friends or family.

Now even though it's Sunday I am planning a pizza, as I can't be bothered cooking after housework all morning and computer stuff all afternoon. And back to work tomorrow! Keeps me out of mischief I suppose, though sometimes I think I would not mind trying some mischief..

A quiet week.

Gary on holiday, Judith not well.. a quiet week, not much being done where the BDS is concerned.

I checked some emails, kept an eye on our facebook page- did you notice Mr. Chris Bainbridge posted that he has had good results treating advanced cases of Dupuytren's with Xiapex? That is very encouraging news.

I have been looking at our shop on http://www.cafepress.co.uk/britishdupsoc . Would it look very strange if I gave friends and family a bumpersticker for Christmas? And do I care if it seems a strange present? Spreading awareness of Dupuytren's and Ledderhose is worth something too!

After 9 months painful physiotherapy even my physio does not understand why my ( still frozen) shoulder still won't move normally. I am almost ready to give up and just accept a limited range of movements. Painfree movements would be nice though. Maybe try a few more sessions, and keep exercising, swinging weights around to stretch the capsule and ligaments.

I hope to do a hangout with Judith on Sunday, and may have another report then.

Just spend a constructive hour talking to Gary.

Just spend a constructive hour talking to Gary. We discussed a lot of things, from contacting Pfizer to setting up an You Tube account for the BDS, ordering leaflets or business cards, setting up proper membership, the shop Gary set up.. and what we would do if the BDS had a very large bank account.

As a lottery win is not very likely we shall start small, one thing at the time,

I am sitting by the computer because New Zealand is beating Schotland at rugby, and it's a shame to watch. The Schots are trying but really they don't have much chance. Still, the result is not final till the game is over.

Imagine one of these sportsmen getting Dupuytren's  ( or Ledderhose, frozen shoulder..), that would be the end of their career. I cringe when I see how they get battered. But many jobs become a lot more difficult if your hands/ feet/ other joints don't move as they were supposed to.

Time to find a permanent cure, come on researchers!!

Anna