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Radiotherapy on NHS?
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04/11/13 00:40
leo 
04/11/13 00:40
leo 
Radiotherapy on NHS?

Hi im a student in my final year of a music degree and have just been diagnosed with Dupuytrens ... not the best timing as i was hoping to start my career as a musician!

I have been doing loads of research over the last few months and have decided radiotherapy is the best option for me at this point, but being a student im of course skint.. and have not come across any affordable options. Privately it will cost me around £2000 in the UK.. and a similar price if i go to Germany to be treated by Dr S.

I am desperate to be treated asap because my window for effective radiotherapy treatment seems to be closing with my progressing disease.

Does anyone know of anywhere in the UK that offers radiotherapy for DD on the NHS? or am i fighting a loosing battle here?

Thanks all, leo

04/11/13 10:26
spanishbuddha 

Administrator

04/11/13 10:26
spanishbuddha 

Administrator

Re: Radiotherapy on NHS?

I am aware of RT being performed on the NHS by hospitals in the SW, East Anglia and Manchester. That's it. What area are you in? With the change from PCT's to CCG's it is not clear if this situation will change, but the starting point is your GP and local CCG.

Someone else on this board, also a student at the time, raised the money for private RT treatment of LD, via various sponsored activities. Probably too late to start training and enter this years London marathon

04/11/13 11:36
leo 
04/11/13 11:36
leo 
Re: Radiotherapy on NHS?

Yer it seems a bit late to raise funds the chord is forming quite fast now

I live in Southampton/Brighton.. My GP told me to come back when it starts to contract which i hear is typical despite NICE guidelines..

I wonder if it would be possible to get treated in manchester or if they would be reluctant to treat someone outside the city?

thanks for the reply :)

04/11/13 12:56
spanishbuddha 

Administrator

04/11/13 12:56
spanishbuddha 

Administrator

Re: Radiotherapy on NHS?

leo:
Yer it seems a bit late to raise funds the chord is forming quite fast now

I live in Southampton/Brighton.. My GP told me to come back when it starts to contract which i hear is typical despite NICE guidelines..

I wonder if it would be possible to get treated in manchester or if they would be reluctant to treat someone outside the city?

thanks for the reply :)
Well just to be clear there is NICE guidance for RT on the NHS http://www.nice.org.uk/guidance/IPG368 and you could show this to your GP (who seems to be unaware?).

The real problem in the NHS is shortage of radiologists who have knowledge of treating DD with RT, and the equipment is heavily used for cancer(s). This leads to practical difficulties in obtaining a referral, even if a hospital has done it before.

See this thread http://www.dupuytren-online.info/Forum_E...eter-0_834.html and this one http://www.dupuytren-online.info/Forum_E...k-0_1239_2.html for Exeter which is closest for you.

04/12/13 12:01
sunflower 
04/12/13 12:01
sunflower 
Re: Radiotherapy on NHS?

Hi spanishbuddha, Just been to see my doc this morning about being referred to Exeter and she was a) very negative about radiotherapy as a treatment (her husband is the surgeon who performed both my ops) b) sceptical about the chances of getting a referral as it is outside of my area. She has agreed to have a go but I'm not holding my breath! I'm 15 miles from Manchester so I'm guessing I might have more chance there, do you have contacts for NHS in Manchester?

04/12/13 13:45
spanishbuddha 

Administrator

04/12/13 13:45
spanishbuddha 

Administrator

Re: Radiotherapy on NHS?

sunflower:
Hi spanishbuddha, Just been to see my doc this morning about being referred to Exeter and she was a) very negative about radiotherapy as a treatment (her husband is the surgeon who performed both my ops) b) sceptical about the chances of getting a referral as it is outside of my area. She has agreed to have a go but I'm not holding my breath! I'm 15 miles from Manchester so I'm guessing I might have more chance there, do you have contacts for NHS in Manchester?
Hi sunflower

Yes the BSSH are not supportive of RT as a treatment for DD. You should do some research of your own in the literature, starting from this site, also the NICE referenced publications, 'the book' (http://www.springerlink.com/content/978-...6312&page=1)and elsewhere, and come to your own conclusions.

I am afraid I do not have contacts in Manchester, but I will just say that to my knowledge RT has been performed on the NHS for DD at least once in recent years at 'The Christie' http://www.christie.nhs.uk/.

Do let us know what you decide and your progress. Good luck and best wishes.

04/28/13 10:57
Mary 
04/28/13 10:57
Mary 
Re: Radiotherapy on NHS?

I was referred to Exeter last year from Worcs, GP was reluctant but wrote the referral anyway. I had no problems with PCT, Exeter took care of everything. Would highly recommend..

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