Friday 29 March 2013

Nice Scoping meeting

Well, the Nice scoping meeting is behind us.

The main discussion points were:
- what treatment can Xiapex realistically be compared with? We decided only fascietomy ( surgery) as that is the only treatment routinely offered in England
- Which people can get Dupuytren's and is there a group in those patients that should be treated different? We decided anyone can get it though some groups are more likely to than others ( eg northern European, Serb and Croats, people from Haiti - I did not know that one!) but every case should be judged on it's own accord by patient and doctor, you can't say this group needs surgery more often and that group is better with injections)

I had the feeling a lot of it was educating the people from Nice, they were baffled by the answers now and then ( And how soon does it recur? Well that varies per patient.  How many operations are needed? Varies per patient. So if it starts young it as always more aggressive? No, just in most patients, there are lucky ones.) And they were shocked when I mentioned that amputation is generally seen as the final option for cases that don't respond to surgery, they had not come across that one in their research). 

Now Nice has to make a summary report, which will go back to the Department of  Health.

One of the BSSH surgeons asked for guidelines as he thought that could really help patients ( when should Xiapex be considered ratherthan only surgery) but Nice said this was just an appraisal meeting, so only to see if theycan decide on funding or not funding, not to form guidelines. Maybe in years to come?

On a more positive note I have heard that radiotherapy is available on the NHS in Exeter, done by a Mr Goodman.

Anna

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