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NICE Initial Consultation Response on approval for RT for DC
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07/26/10 17:37
philwaite 
07/26/10 17:37
philwaite 
Re: NICE Initial Consultation Response on approval for RT for DC

The link is now working perfectly - thanks

07/26/10 18:59
philwaite 
07/26/10 18:59
philwaite 
Re: NICE Initial Consultation Response on approval for RT for DC

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.

07/27/10 14:48
handhurt1 
07/27/10 14:48
handhurt1 
Re: NICE Initial Consultation Response on approval for RT for DC

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

Would be interesting to know just how many have posted comments.

07/28/10 10:24
philwaite 
07/28/10 10:24
philwaite 
Re: NICE Initial Consultation Response on approval for RT for DC

handhurt1:
Have posted my comments, and asked that info on where we could get RT on NHS close to home would be very useful.


Very good point to make & ties in very well with the proposal that all relevant medical contacts (starting with GP's) need to have an urgent educational refresh on treatment options for Dupuytren patients.

08/07/10 12:21
handhurt1 
08/07/10 12:21
handhurt1 
Re: NICE Initial Consultation Response on approval for RT for DC-latest info

I am writing to inform you that the registration facility for the Interventional Procedure Advisory Meeting to be held on the 9th September 2010 will be opening on 11th August 2010 on the NICE website.

The link to register will be available on this page http://www.nice.org.uk/newsroom/publicmeetings/IPAC.jsp on the 11th August





Registration will be closing on the 25th August at 5pm.



This meeting should involve the following:





1. Newly Notified Procedures



844


Hand allotransplantation


Part 1 only (Open session)



816


Percutaneous atherectomy of femoro-politeal arterial lesions with plaque excision devices


Part 1 AND Part 2

(Open and closed session)



863


Therapeutic hypothermia following cardiac arrest


Part 1 AND Part 2

(Open and closed session)



29_2


Extracorporeal membrane oxygenation for severe respiratory failure in adults (review of IPG39)


Part 1 AND Part 2

(Open and closed session)



802


Deep brain stimulation for refractory chronic pain syndromes


Part 1 AND Part 2

(Open and closed session)



895


Deep brain stimulation for intractable trigeminal autonomic cephalalgias


Part 1 AND Part 2

(Open and closed session)



2. Public Consultation Comments



306_2


Non-rigid stabilisation techniques for the treatment of low back pain (review of IPG183)


Part 1 AND Part 2

(Open and closed session)



191_2


Interspinous distraction procedures for spinal stenosis causing neurogenic claudication in the lumbar spine (review of IPG165)


Part 1 AND Part 2

Open and closed session)



20_3


Uterine artery embolisation for fibroids (review of IPG94)


Part 1 AND Part 2

Open and closed session)



400


Cryotherapy for the treatment of (colorectal) metastases in the liver


Part 1 AND Part 2

Open and closed session)



318_2


Selective dorsal rhizotomy for cerebral palsy (review of IPG195)


Part 1 only (Open session)



228_2


Selective internal radiation therapy for non-resectable colorectal metastases in the liver (review of IPG93)


Part 1 AND Part 2

(Open and closed session)



780


Radiation therapy for early Dupuytren’s disease


Part 1 only (Open session)





Please be aware that this is a proposed agenda and some items may change.



Best wishes,

08/08/10 04:32
flojo 
08/08/10 04:32
flojo 
Re: NICE Initial Consultation Response on approval for RT for DC

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

08/11/10 21:31
PhilipHa1 
08/11/10 21:31
PhilipHa1 
Re: NICE 9th September meeting

Hi,

As per previous posts, a reminder that you can now register for the NICE meeting which will discuss the approval of RT for treatment of DD in the UK:

http://www.nice.org.uk/newsroom/publicme...action=register

I am planning on attending and will report back as per the last meeting. I am hoping the meeting will be brief and straightforward and the approval will go through?

Please let me know if anyone else is planning on attending?

Philip

08/13/10 14:00
philwaite 
08/13/10 14:00
philwaite 
Re: NICE Initial Consultation Response on approval for RT for DC

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

09/10/10 12:21
PhilipHa1 
09/10/10 12:21
PhilipHa1 
Notes from London 8 September NICE commitee meeting

Hi,

I attended the NICE committee meeting which discussed the second round of consultation comments, I have attached my notes. Basically as far as I can tell the recommendation of allowing RT for DD but with 'special arrangements' from the last round of documentation will hold i.e. that decision is unlikely to be overturned - which I think is good news for the treatment of DD patients with RT in the UK.

Philip

Attachment
8 Sep 2010 Consultation Meeting Notes.pdf 8 Sep 2010 Consultation Meeting Notes.pdf (52x)

Mime-Type: application/pdf, 202 kB

09/10/10 12:32
wach 

Administrator

09/10/10 12:32
wach 

Administrator

Re: NICE Initial Consultation Response on approval for RT for DC

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

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