Waiting for NICE final decision

Almost crunchtime now, next week NICE make their final decision on collagenase use in England on the NHS public. I am not hopeful, but you never know.

 

We can edit our website again, so I have updated the doctors page with the new information I have, and added a page with tips on how to cope with Dupuytren's or Ledderhose. If anyone has any other good tips email me and I might add them next time! anna@dupuytrens-society.org.uk

 

Prof Nanchahal in Oxford is starting a clinical trial looking into a novel treatment to stop nodules developing into cords. NIHR ( National institute for health research) has put money aside for a trial comparing collagenase in moderate cases with needle aponeurotomy. So this is all positive!!

 

For the links just go to our website, they are on the 'home' page.

 

Birgir has attended a NICE scoping meeting on collagenase treatment for Peyronie's. We are not sure if that is going to progress to an appraisal (ie if NICE is going to consider paying on the NHS).

 

Gary is running more and more, a tribute to his chosen treatment of radiotherapy for his Ledderhose, a few years ago he would not have been ale to contemplate walking any distance, never mind training for a half marathon. And for those who advocate surgery: that is always an option, but seeing there is always a risk of recurrence and painful scarring, this seemed the better first choice to him. And it worked! Gary will be running his half marathon to raise money for Pancreatic Cancer Uk. Any sponsorship will be welcome, can be done via his Ledderhose blog.

Wintertime started

Well, today winter time has started, it is dark and cold, and I bet you are all feeling it in your hands and feet. Keep warm, don't be ashamed to wear mittens if gloves won't work anymore! For me men's gloves medium to large has been a good options for a long time, as womes gloves always have thin fingers, and bendy ones won't fit in them.

Two weeks ago almost we had our first training day in London, Gary, Henry Orton and I were there. The morning was media training, how to answer questions and try to get your message accross, the afternoon was about Wordpress for when we move the website over. A second day is planned but no date yet.

The 14th October was another morning in Manchester for the next NICE appraisal meeting, this was an extra one but fortunately I happened to have that week off work so I could attend. The team wanted extra information before making their decision. I hope they decide in favour of patients being able to have the Collagenase injections on the NHS if they have a suitable contracture.

My computer problem with my virus scanner not allowing me to access the website is fixed, after the latest AVG free version update I can now keep the program running while I manage the site. This means I can spend a bit more time on it, so I have made some updates on the History page and of course the Doctors and Clinics page, websites and doctors addresses seem to change weekly.

We are thinking about a new logo, the present one was borrowed from the International Dupuytren's Society and can apparently in some countries or societies be seen as rude, a hand with one finger bend down. We must all be rude people, as many of us go through life like that! But anyway, I had seen a picture I really liked, enquired about buying it and got an email back saying we could buy the oicture but not the copyright, so we would not be able to use  it for logo or modify it. No use to us, so back to the drawing board for that one. I will keep you informed.

Gary has been busy with his surveys and is setting up a section on his blog for patients life stories, please feel free to check it out. http://ledderhose.blogspot.co.uk/ 

Anyone who is good at sketching or drawing feel free to have a go at making a logo, ideally somethng with a hand (with one or two bend fingers and a visible cord) and a foot with a lump. Not much to ask is it?

Anna

What have I done this week?

In response to the post made by Anna I can say that my wife and I are fine I just didn't have the time for the hang out this evening :-) (This was pre written and ready to post this evening after the afore mentioned missed hand out).

Well this week has again been quite busy. We have been working on preparing some videos that help to explain some of the basics about the charity and what exactly Dupuytren's and Ledderhose are. This will help give us another stream through which people can access the charity and it is also a great way to interact with people as reading a lot of text can get a bit boring (honestly what is to come in this post is really exciting so read on....)We are also setting me up an e-mail account so that I can set up the YouTube account to upload the videos to, I am sure links will be posted from here, or they can even be posted on here as well!

We have also been following through with some of the things that we mentioned last week and I am looking into getting reduced price software for the charity that should allow us to do things in an optimised manner. The more professional that we can make things the more chance we have of raising the money that we need in order to make the changes that can make a difference to patients.

Ledderhose Logo 

One of the ways that we might be able to raise money is through give as you click schemes, basically we try to get as many people as we can to pick the charity as their 'chosen one' and before they shop they visit this site and click the link to the shop they are going to use and the BDS will get about 1% of the sale price at no cost to us and at no cost to the buyer. So, once we have done that it would be great if you could sign up for it, we will keep you posted and even if you just manage to raise a pound a month through using it, if 100 people do that we could be on for £1000 a year, not likely but would be fantastic given the size of the charity.

There are also certain places that will give you free charity business cards if you in turn support them back, just simply by telling the trust and saying that they are proving them, so this is an area we are looking into as a possibility for not only business cards but also things like leaflets.

Dual Logo 

What else, oh yes, you can also now visit the shop and find our lovely new logos, this was an idea mentioned by Anna. Seeing as I am a Ledderhose patient and tend to focus a little bit on this (I am sure over the coming years I will become just as knowledgeable on Dupuytren's) that we should have a logo with a Ledderhose foot and I also made a dual one, see them above and check out the shop for all sorts of things with these designs on them...

 We could also have some help in coming up with ideas for several different things so please comment if you have ideas on what I / we can do to access a different market of fund raisers for fund raising activities as this would be great. We have a couple of ideas in the pipeline which we will keep you aware of once they become reality.

My first week as a trustee

This last week has been my first as a trustee for the British Dupuytren’s Society (here after BDS) and I think it is fair to say that I have settled in to making suggestions and seeing what happens. We have already had 2 meetings since the AGM and a lot has been going on.

This week I have tried to find changes and developments that we can make to help improve the charities visibility and hopefully help to increase the income, not least through trying to come up with ideas for what I can do as fund raisers as surely this is the least I can do for the charity. Fingers crossed that in the next year you see some pro-active fund raising from me, the difficult aspect is getting other people donating as you can’t do so many things in a year and ask the same people to give you money over and over again.

So what are the changes that we are making and hoping to make?

I suppose that it is best to start with the obvious which is this blog. Many people will know that I am quite an experience blogger having come in contact with the BDS through my Ledderhose blog (see BDS website for links) and we all felt that a blog could bring something extra to the charity. The blog is designed to be a less formal way to stay in touch and interact with patients by keeping them more up to date with what we are doing (in our own time remember) on a weekly or monthly basis) and hopefully how these changes will impact the all-important patients (which don’t forget includes us).

Another fairly small and quick change that I have implemented and just needs some more linking is to make a BDS shop – see here http://www.cafepress.co.uk/britishdupsoc. The shop is free to run and was quick to set up and any profits will go to the BDS, so if you fancy a jumper to support us or a bib for your baby, certainly one I will be thinking about, then have a look round and give us some support through not only the profits but also through the awareness you can raise by having a bent finger on your chest.

I think that is it for the main changes this week, but in the long term we really hope to make a difference, from my point of view as a Ledderhose patient it would be great if we could get more recognition of radiotherapy as being a good treatment option for Ledderhose and maybe even one day get it on the NHS, surely having patients undergo a little bit of radiotherapy for 2 weeks in total must be cheaper than performing surgery and managing recovery and physiotherapy and then probably having to perform that again and again because it keeps on coming back? From a Dupuytren’s point of view I am sure there are lots that we can do but one of the things that has stuck with me in the first week is that patients are not getting referred to specialist from their GP until the disease has reached a point where their treatment options are limited and again this means that radiotherapy cannot be used. I am not saying that I think radiotherapy is the be all and end all but I think that is a lot of patients it can work and it can therefore stop unnecessary surgery as it can stop disease progression and prevent surgery.

It also turns out that this week is trustee week, I have only been doing it for one week so I’d like to acknowledge the work done by the past and present trustees as the BDS and perhaps together we can take this charity to another level.