NICE Initial Consultation Response on approval for RT for DC (1 | Dupuytren |

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NICE Initial Consultation Response on approval for RT for DC
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PhilipHa1 

PhilipHa1 
NICE Initial Consultation Response on approval for RT for DC

Hi,

As some of you may know NICE the UK organisation for approval of treatments has been looking at approving radiotherapy for dupuytrens contracture. They have just posted their initial repsonse document, which comes to the conclusion that RT should only be used for DC for 'research purposes'.

The URL's for the findings are:
http://www.nice.org.uk/guidance/index.js...yId&o=12353
and
http://www.nice.org.uk/guidance/index.js...cle&o=47994

The findings were determined by who I think are 3 hand surgeons (Mr C Bainbridge (British Society for Surgery of the Hand), Mr V Deveraj (British Society for Surgery of the Hand), Mr G Giddens (British Society for Surgery of the Hand).), so it is not surprising that they came to their conclusions. Their conclusions were their reviewed by a committee of 20 medical personnel who review all NICE cases, there was one radiotherapist on the committee Dr John Rose of the Freeman Hospital in Newcastle, who I have not heard of.

I phoned them up this morning to ask why there were no radiotherapists respresented on the review committee of 3 and I was told I would have to get in contact with Ben Doak (ip 'At' nice.org.uk) to find out the reasoning. I am a little annoyed about the process as went the initial questionaire was sent out to a number of people in the autumn I volunteered, but they refused to allow me to complete the questionnaire but despite a number of emails could not give me a reason. I also suggested that they should make use of the services of the professor of radiotherapy I had used in the UK before getting treatment 10 years ago, they did not take me up on this offer.

Anyway, I guess it might be worth others on this forum reviewing the initial consultation document and providing feedback on this forum, or directly on the NICE site? Do you think it might be worth coordinating our responses?
Philip

wach 

Administrator


wach 

Administrator

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

Philip, thank you for bringing this to attention. Having an Advisory Committee of hand surgeons judging a procedure that aims to postpone or avoid surgery might not been optimal. It ought have RT specialists on board as well.

Personnally I believe that it might help if patients familiar with RT provide their feedback on the available Internet form http://www.nice.org.uk/guidance/index.js...cle&o=47994. Coordinating this feedback would take considerable time and still not improve the quality. Direct honest feedback might be better.

I have no idea why you had not been allowed to respond to the questionnaire. One would think that NICE would like to collect as much feedback as possible. This forum might actually be able to help in this respect.

Wolfgang

Edited 03/25/10 16:28

PhilipHa1 

PhilipHa1 
Re: NICE Initial Consultation Response on approval for RT for DC

I have emailed NICE asking them about the makeup of the committee of 3 hand surgeons (?), I have also asked why I never got a response to my suggestion of making use of a Professor of Radiotherapy I know for technical advice?

I have also emailed John Rose in Newcastle, who is a radiotherapist on the NICE approval comittee of 20 people to ask him whether he has had much involvement in the process so far.

I will let you know if I get a response from either.

PhilipHa1 

PhilipHa1 
Re: NICE Initial Consultation Response on approval for RT for DC

I said I would provide an update on any feedback I got from NICE as a result of my questioning the appointment of 3 hand surgeons and no radiologists to write this report.

Unfortunately, as with my experience with the same question in November 2009 I have not received a response to emails and telephone calls.

So, unfortunately I felt I had no choice but to escalate my 'complaints'. I have now written to Sir Andrew Dillon, CEO of NICE and my local MP as I feel the consultation is flawed.

I will let you know if I make any progress!

TrevB 

TrevB 

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

I replied on the website:

"Your comments have been submitted to the NICE website and will be processed by the NICE team managing this work."



Cambidgeshire, UK.

wach 

Administrator


wach 

Administrator

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

Just curious whether anyone received any feedback after submitting comments to NICE on their draft assessment of radiotherapy for Dupuytren's disease?

Wolfgang

TrevB 

TrevB 

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

wach:
Just curious whether anyone received any feedback after submitting comments to NICE on their draft assessment of radiotherapy for Dupuytren's disease?

Wolfgang

I completed and returned the paper version and also responded on the website but have had no reponse to either submission (at least I don't think I have but the paper version was returned a good while ago so I may not recall any reply!).

Cambidgeshire, UK.

Edited 05/16/10 19:36

PhilipHa1 

PhilipHa1 
Re: NICE Initial Consultation Response on approval for RT for DC

FYI: NICE will discuss the consultation at their next committee meeting on Friday 11th June, the agenda is as follows:

http://www.nice.org.uk/newsroom/publicme...y11June2010.jsp

RT for DC is not on the agenda, but will be discussed for up to 30 minutes. They have asked an anonymous oncologist with experience of treating DC with RT to attend to provide information, my guess is this may be Dr Goode as I am unaware of too many other oncologists who have treated DD using RT in the UK. They are unable to tell me when during the day the consultation will be discussed. Members of the public are allowed to attend, but I think they are not allowed to speak. I am planning on attending and will report back. If anyone else is interested, its in Holborn in London starting at 10.30, you have to register in advance if you are planning on attending ( 020 7045 2049, email bukky.gibson@nice.org.uk ).


I am still progressing with my formal complaint about the process, mainly due to the fact they only consulted with hand surgeons and no one with any experience of RT was consulted, and the inaccuracies in the report. I guess the fact they have now asked an oncologist with experience for advice is some sort of admission? I haven't learnt very much as the process is painfully slow. I did learn that one of the hand surgeons is a paid consultant for Auxilium. They will also publish a response to issues raised in the consultation (an example for a different consultation appear here: http://www.nice.org.uk/nicemedia/live/11157/46766/46766.pdf ) which I believe may be published after the meeting on Friday, unfortunately they have been unable to confirm a date or whether they will respond to all the issues raised during the consultation or just selective issues.

PhilipHa1 

PhilipHa1 
NICE consultation meeting London June 11th

I attended a committee meeting on Friday in London to discuss the NICE consultation on using Radiotherapy for Dupuytren's Contracture. I think the meeting went well if you believe that RT is a suitable treatment for DD. My understanding from the meeting is that the initial consultation document will be re-issued for comment with new recommendations.

I believe the new recommendations will say that the treatment is recommended but with special conditions; this is a reversal of the previous recommendations. This change was a result of new information: a) advice from an oncologist b) patient feedback c) a new paper (Betz). Thank you to everyone who provided feedback on the consultation to NICE. I suspect the process will now go through another iteration of comments.

I have attached my more detailed meeting notes as a PDF as there is not enough space in the blog and formatting is difficult.

Datei-Anhänge
Writeup of June 11th Meeting.pdf Writeup of June 11th Meeting.pdf (161x)

Mime-Type: application/pdf, 209 kB

TrevB 

TrevB 

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

Thanks for that Phil, sounds positive. Is the Betz paper available anywhere or is it one of those subscription or the like documents?

Trevor
Cambidgeshire, UK.

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