Last year (2009) I managed to get myself referred to Weston Park Hospital in Sheffield, UK, in the hope that I could have RT on my ledderhose (both feet) and dupuytrens (both hands). No joy I decided today to phone Dr Goode's secretary in Poole but was given the information that he no longer did RT and that he was still on long term sick leave. His secretary then suggested a Dr Nicholl in the Acute Hospital in Carlisle. I phoned his secretary and was told that he no longer did RT on ledderhose because it was not approved in the UK. While it looks pretty grim as far as receiving RT on the NHS I think it would still be worth getting referred to your nearest hospital just so that the doctors there become a little more aware of the demand for this treatment. If we don't make our voices heard things will never change.

I had also emailed Prof Seegenschmiedt in Hamburg and received his reply today. He said he is no longer treating patients in Essen (he only follows up the patients that he has treated there) and that he is back at work in Hamburg. He recommended travelling out on a Thursday so that the first consultation could be done on the Friday followed by the first five sessions of RT the following week. A further five sessions would be given three months later. He approximated the cost to around 500 euros for each hand/foot for each session of five treatments. So for me the cost would be in the region of 4000 euros in total for the complete treatment of both hands and both feet - that's if treatment was thought to be suitable for me. This plus the fact that I have to travel to and stay in Hamburg really starts to get expensive. I must admit I was a little shocked at the cost. Has anyone received RT recently and if so can you give me an indication as to how much you paid and where you received your treatment?

Thanks for the information about a possible less costly option. I have emailed Prof Seegenschmiedt to ask about having 7 sessions over one visit. This would definitely help to cut the costs. Unfortunately for me both hands and both feet are affected. Maybe, as you said, treatment would not be deemed suitable for all four extremities but I shall have to wait for a consultation to find that out.
Has anyone else paid for treatment in Germany? If so who did you go to for treatment? Have you any advice about where to stay etc?
Thanks once again
Chris

Hi Shirley,
I have pursued treatment with Prof Seegenschmiedt in Hamburg and am going in two weeks for my first consultation and possible treatment. Unfortunately it looks as though I shall be having treatment with another radiologist in the clinic as Prof Seegenschmiedt is in Florida at a Dupuytrens conference for the week we'd arranged. I'm sure it will be fine.
NICE haven't authorised this treatment in the UK - they think it to be 'experimental' - so let me know how you get on if you do go to the hospital you mentioned. When you go, take with you details of the research done by Prof Seegenschmiedt plus details of radiation doses etc. In fact anything that will help them to decide in your favour.
I do intend to post again in a month or two but if you want to follow this up with me personally you can email me on ibbo55@hotmail.co.uk.
Good Luck
Chris

Have been back from Hamburg for a week now. All went well. I had both hands and both feet treated tho' Prof Seegenschmiedt did say that I should have got there 3 years earlier with my hands. Treatment is so much more successful the earlier you have it. I go back for my second series of treatments in the middle of August.

We didn't discuss how long it would be before I would see results. I'll ask when I go in August.
Don't think about it too long!
Chris