UK treatment of Dupytrens using radiation |
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04/13/2008 18:07
phil
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04/13/2008 18:07
phil
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Re: UK treatment of Dupytrens using radiation
I have just yesterday been turned down by Oxford Primary Care Trust for Radiotherapy Treatment in Poole- My GP was fully behind me and we provided evidence from Pof Seegenscmied`s recent book Radiotherapy for Benign Diseases.Despite this the PCT claimed- "there is insufficient evidence for the PCT to support a referral for this procedure." I`m contesting this decision and will keep the forum informed.At stake, the rights of UK citizens to have the option of a well tested treatment for DUPS LEDERHOSEN AND PEYRONIES as part of NHS treatment.
Phil UK
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04/13/2008 18:42
TrevB
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04/13/2008 18:42
TrevB
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Re: UK treatment of Dupuytrens using radiation
Sounds like I could be in the same boat? I've just set the wheels in motion but haven't seen my GP yet and I am not in Dorset. Please keep us informed of progress.
Newman reported that "I did my research and when I read that in Germany in 07 they had treated 40,000 patients for 28 different disorders any cause for worry on my part was put to bed. When I was in Germany last December one of the radiologist said that they had recently treated a 12 yr old female for Ledderhose. "
What records do they keep in Germany? Surely that amount of procedures shows the NHS of the worth of the treatment?
Also, has anyone from Dorset had the treatment funded by that authority? If so, why did they think the treatment worthwhile but Oxfordshire doesn't?
It's all very confusing isn't it?
Edited at 04/13/08 22:46
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04/13/2008 19:08
GeorgeDaymond
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04/13/2008 19:08
GeorgeDaymond
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Re: UK treatment of Dupytrens using radiation
Thanks to Steve and TrevB thus far. It's all starting to get interesting (in part I do appreciate because I'm doing the research rather than being the recipient of any treatment - but prostate is waiting in the wings!). George
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04/14/2008 10:13
phil
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04/14/2008 10:13
phil
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Re: UK treatment of Dupytrens using radiation
I have today telephoned Dr Goode`s Secretary in Poole who has informed me my GP did not need to refer my case to the PCT in Oxford.All she needed to do was to refer directly to th Oncology Dept in Poole.This is good news for all of us in the UK seeking Radiotherapy treatment for Dups.Dr Goode`s secretary kindly telephoned my GP informing her of the procedure and the referral has now been made.I woulld suggest to all of you seeking this treatment to urge your GP to make a direct referral and if you need any help call Dr Goode`s secretary Ann on 01202 442690.Looks like things are moving forward in the UK.
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04/14/2008 12:38
TrevB
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04/14/2008 12:38
TrevB
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Re: UK treatment of Dupytrens using radiation
Useful info, thanks Phil.
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04/15/2008 09:51
philwaite
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04/15/2008 09:51
philwaite
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Re: UK treatment of Dupytrens using radiation
Yesterday I called Poole Hospital to confirm my treatment review appointment details. Dr Goode's secretary did confirm that Poole were still willing to accept new patients from outside of the county. It really does look like there is a realistic chance for radiation treatment for new applicants.
So, why wait any longer? Get visiting your GP and get the wheels in motion.
Don't forget that there is the transport and accommodation to think through/budget & organise.
Typically, Dr Goode will see new patients for a 'planning' meeting on a Friday. If successful, treatment will start on the Monday and will continue through to Friday (i.e. 5 consecutive treatments). So, if like me you live several hours driving time from Dorset, you will need to stay over from Thursday night of week 1, up to and including the Thursday night of week 2 (eight nights in total). The second treatment (after a gap of 6 weeks) would start on a Monday so only need to stay over Sunday to Thursday inclusive (5 nights).
I am assuming that most have already read the two very well written personal experiences of radiation treatment on this site but, just in case, here are the links:
http://www.dupuytren-online.info/Radiati...tren-Judith.htm
http://www.dupuytren-online.info/Radiati...Essen-Nigel.htm
My post radiation experiences mirror almost exactly those described by Nigel in his article above. Really not a problem at all & hopefully, well worth these minor inconveniences.
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04/15/2008 11:19
Wolfgangnot registered
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04/15/2008 11:19
Wolfgangnot registered
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Re: UK treatment of Dupytrens using radiation
It's hard to imagine that no other hospital in the UK would be able & willing to do radiotherapy for Dupuytren's. The real issue might be to find such clinic. If you are living far away from Poole and can't travel there (7 - 10 times) you might contact local hospitals and ask whether they would be able to provide that treatment locally.
Good candidates might be
- research oriented clinics, e.g. university clinics, that have an oncology department
What they would need is a low energy x-ray equipment for radiation therapy. Interesting enough, the equipment used in Seegenschmiedt's clinic in Essen is manufactured in the UK. The manufacturer is Gulmay http://www.gulmay.co.uk/ and might - or might not - be able to tell who has such equipment in the UK.
If required, we, i.e. Dupuytren Society, can provide to the clinic publications and a general description of this radiotherapy.
Wolfgang
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04/15/2008 12:51
philwaite
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04/15/2008 12:51
philwaite
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Re: UK treatment of Dupytrens using radiation
Wolfgang you must be right and certainly some basic homework & questioning, focused on your own doorstep, would be sensible for everyone to try before they travel unnecessarily. The fact is however that not every GP or local health authority is as helpful as we would like it to be (indeed I still can't understand why hand surgeons are apparently so anti alternative potential solutions). In which case, and with the Dupuytren clock running, its certainly good to know that there is one door already firmly open. Lets hope that it's just the start of a wider success story for the UK.
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04/15/2008 14:25
Wolfgangnot registered
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04/15/2008 14:25
Wolfgangnot registered
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Re: UK treatment of Dupytrens using radiation
The Orthovolt is an x-ray machine and sounds like the right equipment for radiotherapy. The linear accelerators probably produce electrons and might also be able to do the job. Sounds like good equipment but you will need to aks because it also depends on the energy of the radiation. The Othovolt should have 100 - 140 kV voltage. The electons typically are several MeV.
Wolfgang
Quote:
Addenbrookes is about 40 miles from me, anyone know what this equipment is? http://www.addenbrookes.org.uk/serv/clin...acilities1.html
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