| UK treatment of Dupytrens using radiation |
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09/08/2008 16:21
Wolfgangnot registered
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09/08/2008 16:21
Wolfgangnot registered
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Re: UK treatment of Dupytrens using radiation
Too fast and wrong -- sorry about that!
Wolfgang
Quote:
Whoops - not the same Phil!
Hi Wolfgang,
Just to avoid any possible confusion, I am not the 'Philip' featured in the 'Experiences with Radiotherapy' lead articles.
Regards,
Phil Waite
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09/17/2008 06:34
TrevB 
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09/17/2008 06:34
TrevB
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Re: UK treatment of Dupytrens using radiation
Quote:
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.
I phoned Ann last week and see my GP tomorrow. He told me a couple of months ago that my case would need to be referred to the PCT BUT I'll be hoping to get a referal direct to Dr Goode. I'm less than happy about being messed about physically in any way and Radiotherapy does worry me but although my disease has progressed since diagnosed 3 years ago I'm still at N stage. I'd perhaps be silly to miss the opportunity hoping that something else might work later. Surgery is my big worry because I've only got full use of my right hand (affected) and little use of my left so taking my right out of action is not a option 
Cambidgeshire, UK.
Edited 09/17/08 09:35
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09/17/2008 07:49
philwaite 
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09/17/2008 07:49
philwaite
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Re: UK treatment of Dupytrens using radiation
Let me start by clearly stating that I am, by no means, an expert on UK health rules & regs..
However, I am fairly sure that provided that the Poole radiology team are willing to treat you using their own budget/resources, then your GP is not in a position to prevent you from attending.
After your attendance he will get a letter from the hospital advising him of the treatment you received followed by updates after your post-treatment observation sessions (results). These post treatment sessions are after about three months & six months. He then has a complete record to add to your already existing, local, file.
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09/18/2008 08:31
TrevB
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09/18/2008 08:31
TrevB
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Re: UK treatment of Dupytrens using radiation
I've just had a positive meeting with my GP. He still wasn't convinced that he could refer me directly to Dr Goode due to some new system they have (he knows more than I about that) but he said that he would if possible and I copied all of the details from this site.
I explained my reasoning and fears and he was genuinely interested an appreciative of my research. I also explained about NA (PNF) and said that there are several doctors in the UK providing this less stressful option to those suitable. I also mentioned Collegenaese and the progress with that and how NICE might approve that in couple of years if all goes well?
But the upshot is that I wanted the option of radiotherapy while still at the N stage in my only working hand and I'm another step along the way. Hopefully if my GP sees Dups patients in future he'll recall our chat and remember that there are options 
Cambidgeshire, UK.
Edited 09/18/08 11:32
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10/13/2008 18:51
TrevB
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10/13/2008 18:51
TrevB
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Re: UK treatment of Dupytrens using radiation
The good news is that I've today received an appointment to see Dr Goode in a month's time. The bad news is that it's a heck of a trip at this time of year, or any time of year come to that, when one has mobility and others issues. Also, my self doubt has already kicked in telling me that I've really no idea what I'm doing. It's going to be a long month
Cambidgeshire, UK.
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10/13/2008 20:39
philwaite
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10/13/2008 20:39
philwaite
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Re: UK treatment of Dupytrens using radiation
Perhaps try to look at the trip as a 'voyage of discovery'.
Dr Goode is knowledgeable, experienced and is very easy to talk to. At the end of your meeting with him, you will, for the very first time, understand your own specific situation better than ever before. You will be able to balance the potential benefits against any doubts or worries that you might have.
Use the month to plan the journey details and to thoroughly prepare your written questions for the meeting.
This is real progress - at the end of the day, no one will try to make you do anything that you really don't want to do.
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10/14/2008 18:18
pixi
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10/14/2008 18:18
pixi
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Re: UK treatment of Dupytrens using radiation
Yes, don't worry, Trev. I saw Dr Goode in the summer and went there as nervous as you are now. He takes a conservative approach and recommended I not have radiation at this time. I have a follow-up appointment with him in Jan.
And there is a HUGE shopping mall by the train station if you have some time to kill. I suggest a stop at New Zealand Natural ice cream. 
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10/14/2008 20:29
TrevB
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10/14/2008 20:29
TrevB
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Re: UK treatment of Dupytrens using radiation
Quote:
Yes, don't worry, Trev. I saw Dr Goode in the summer and went there as nervous as you are now. He takes a conservative approach and recommended I not have radiation at this time. I have a follow-up appointment with him in Jan.
And there is a HUGE shopping mall by the train station if you have some time to kill. I suggest a stop at New Zealand Natural ice cream.
I wish I'd followed this through in the summer. I first contacted my GP in April but did nothing because I was told it would need to go to the PCT. After reading over the summer that that is not the case I decided a couple of weeks ago to push it as my nodules have grown. The upshot is a 3 1/2 hour drive (which can be 4 or 5 hours on our congested roads, with roadworks and speed traps all over the place) and only 8 or so hours daylight - terrible planning on my part but I did go to Poole Speedway in 2006 so know the layout a little bit. I don't think that the hospital is too far from Wimborne Road.
Cambidgeshire, UK.
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10/15/2008 08:34
Judith_Proctor 
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10/15/2008 08:34
Judith_Proctor
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Re: UK treatment of Dupytrens using radiation
Quote:
The upshot is a 3 1/2 hour drive (which can be 4 or 5 hours on our congested roads, with roadworks and speed traps all over the place) and only 8 or so hours daylight - terrible planning on my part but I did go to Poole Speedway in 2006 so know the layout a little bit. I don't think that the hospital is too far from Wimborne Road.
The hospital has a large car park close by. If you have mobility problems, use the lift to take you to the 'walkway' level of the car park and then you can use the covered walkway to walk to the hospital on the level. The walkway reaches the hospital pretty close to the section you'll need to visit, so it's very handy in that regard.
If you're really nervous and it's a day when I can get into town, I could come along and keep you company.
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10/15/2008 21:54
TrevB
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10/15/2008 21:54
TrevB
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Re: UK treatment of Dupytrens using radiation
That's very kind Judith. I may take you up on that if you're free on that day (Mon Nov 17) if my nerves are really getting the better of me, which is extremely likely. I'm not at my best in the mornings and can't face a four hour drive against the clock to get there for 2pm. A free run is very very unlikely so I plan to travel Sunday and stay at the Arndale Court Hotel for two nights. It's not great but it's what I know and that's important.
Cambidgeshire, UK.
Edited 10/16/08 00:57
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