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!

Nice appeal decision!!

We have a decision! It has taken almost 7 months, but NICE have decided that the appeal should be upheald. Not for the whole of the Dupuytren's community, they still prefer patients to have PNF but for those who are not suitable we can argue the case again. https://www.nice.org.uk/guidance/GID-TAG364/documents/appeal-decision So back to appraisal it is.
Anyone who wants to know what the decision was based on, this document gives the arguments and reasoning. And for someone interested in the whole process: the documents can be found here: https://www.nice.org.uk/guidance/indevelopment/gid-tag364/documents

On another note the Pulvertaft Hand Centre in Derby would like to know what patients feel about splinting, especially after PNF. https://www.surveymonkey.co.uk/r/splintingfordupuytrens  It is a short survey, so won't take much of your time! Go ahead and do it.

The Peyronie's campaign has reached a lot of people and countries, and we are now considering how to build on that. Our Thunderclap reached the 100 supporters-limit, thank you to everyone who supported! We will keep you informed of any other projects we start, for now it is back to appraisal on Xiapex and hoping NICE makes the right decision on Radiotherapy. Exciting times for Dupuytren's patients.

No Guidance yet- nice one!

The time has come for NICE to make their decision, and it seems they are stuck. They have decided more research is needed, thanks to the comments of the handsurgeons (thanks BSSH!) and the patients (meaning: all of us!) who did not want them to reject collagenase. This is good, it means for now it is still up to individual PCT's to decide but they are allowed to accept it, so we still have a chance of getting the treatment that suits the contracture (not all contractures are suitable, some are better treated with surgery).

I am relieved, though I see more work on the horizon for us. But I am sure it will be worth it.

I have decided for now to give up on the idea of doing a science part for the website, my anatomical drawings were not quite up to scratch and my understanding of the affected pathways is decidedly below scratch, so I will look for a few good pages already on the web and seek permission to link to them. I'm sure I will find something.

Designing a new logo has hit the same snag- may lack of drawing talent. Time to think of other ways to get a good logo!

Gary and I are busy planning for the Dupuytren's Conference in May, we have booked accomodation and I have booked my flight, progress is being made! Gary will be presenting the conclusions drawn from the survey he posted a few months ago. I will be trying to gather as much information as I can about recent research and new ideas. And we will have a good time while we're at it!

Our website has been down for a day (or rather: the server was down) but thanks to Richard Proctor of Waveney.com who hosts the site and spend his evening after work sorting it out, the problem was sorted within a day. Good going!

That's all the news for now. Take care of your lumps and cords, be healthy!