Got the following mail to indicate that they are indeed still taking input.
"Your comments have been submitted to the NICE website and will be processed by the NICE team managing this work"

I copied my contributions which are pasted below.
I have not copied the 'long text' from NICE (but you can easily see this on their site) so only the Section Titles are given below.

If you disagree or want to amplify any of my comments, then please do follow up Philip's initiative & fill in the NICE forms, on-line, TONIGHT!!! It's very easy & straight forward to use.

Comment on Section 1: Provisional recommendations
The above caution is wise however a balanced view is necessary. The potential benefits should also be highlighted. Efforts should be made to harvest the experiences of patients in the UK that were treated by Mr Goode at the Poole Hospital. Since Mr Goode left office (ill health?) there has been no 'follow-up' of patients that have received radiation treatment for Dupuytren’s & Ledderhose. Given the shortage of UK feedback on actual results, this seems to be a lost opportunity.

Comment on Section 2.1: Indications and current treatments
Agreed, but again the potential positive (slowing, softening) effects of radiation should be highlighted to give a balanced range of options to the patients AND for the education of GP's who have a very limited & 'stuck-in-time' view of alternative treatments. There is currently the danger that a patient could miss an 'entry gate' for treatment if the information is only delivered late in the development stage of the disease.

Comment on Section 2.2: Outline of the procedure
Good but is there a way of giving the patient a 'relative weighting' of the intensity of 15 Gy? e.g. equivalent of x number of 'X-ray's

Also VERY important is information for patients about their potential options in the event of further advancement despite the radiation. In other words, that patients can subsequently still elect to have NA or open hand surgery if radiation is not (over time) fully effective.

Comment on Section 2.3: Efficacy
Efforts should be made to harvest the experiences of patients in the UK that were treated by Mr Goode at the Poole Hospital. Since Mr Goode left office (ill health?) there has been no 'follow-up' of patients that have received radiation treatment for Dupuytren’s & Ledderhose. Given the shortage of UK feedback on actual results, this seems to be a lost opportunity

Comment on Section 2.4: Safety
It's all a question of balance & tone. Above mentions 'chronic toxicity events' - which evidently includes 'dry hands' - a simple hand cream solves this and needs to be balanced against the hoped for 'slowing down' of progression which pushes back the need for much more draconian treatments - like open hand surgery (which will need more that a spot of hand cream to sooth). Be fair, in the majority of operated cases, a subsequent surgical intervention is necessary as the disease often returns. This can require skin grafts as the new operation is performed on tissue that is already scarred/damaged by the first operation. Surely, in any balanced view, radiation is a worthwhile, balanced risk, option and dry hands a minor inconvenience.

Comment on Section 2.5: Other comments
My experience is clear - GP's refer sufferers to hand surgeons & hand surgeons promote only their own view. Patients who feel the need to consider alternative approaches & risks are very much on their own & must rely on forums etc for input. There is a driving need for education and information sharing within the medical community so that we can make progress towards defeating this cruel & indiscriminate disease. One thing is for sure - keeping doing what we have always been doing is not winning the fight. There are many worse diseases out there & we can count ourselves lucky that it will not be fatal, but so many people are forced to change lifestyles & surrender hobbies & passions (be it golf, playing music etc etc – and simple DIY & self hygiene routines can become difficult or impossible. In other words 'independence' & a life free of pain/discomfort is the prize.

handhurt1:

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Have posted my comments, and asked that info on where we could get RT on NHS close to home would be very useful.

Wow! At least RT for Dupuytren's is on the agenda! That's progress.

Unfortunately can't be there myself but I hope that all goes well and look forward to your kind feedback.
Phil

Philip, thank you so much for keeping us informed and for writing this summary! I feel that we did and achieved what we are able to. I think that's a success of the patients' intervention and it's also a success of the NICE concept to include and listen to patients. Fairly unusual in other countries.

Wolfgang