Hi, just wondered if anyone has been referred to, or is a patient of Professor Chris Denton at the London Free Hospital and if so, how did you, or do you get on with him? I am being referred because of my significant calcinosis involvement. My consultant is great but struggling with how to treat/get it under control. He is the leading UK specialist for our condition I believe. ? My consultant thinks I would be best seen by him for an opinion. However, I live in NE Scotland so a bit apprehensive about traveling to London!
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Eden1234
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I asked to be referred to the Royal Free. I live in the Midlands and travelled to London twice pre lockdown. We made it a bit of a holiday!
Since lockdown I have had 1 appoint (choice of telephone/video which was in Autumn last year). My January appointment was postponed to June and it was then postponed again until November. I received excellent care when I attended plus have a 3-month chat with a scleroderma specialist nurse when I order my meds (which are posted to me as my GP doesn’t represcribe). I have never seen Professor Denton but believe he does attend some clinics.
I only went for a second opinion and have stayed. I think there are other specialist hospitals nearer to you and my friend see a Dr in Birmingham who works from the Royal Free. I share care with a local hospital so don’t travel to London for annual tests like echoes and lung function.
I’ve me Professor Chris Denton & he’s a lovely person. I saw him on my first appointment at Royal Free & the next time I went, I saw a colleague but she went to ask for advice & he was more than happy to come into see me. Each time I go, it seems to be a different person although I do believe that you can request to see certain drs. I have regular 6 monthly check ups but the last few have been either phone or video call. I see a rheumatologist at the local hospital but Royal Free have taken over the primary care of my lupus & scleroderma but all the other tests etc are done at my local hospital.
The scleroderma nurses are excellent too.
I cannot fault anything at all other than the lack of parking!
Hi I am under the Royal Free and have seen Professor Denton he is obviously extremely knowledgeable and also calm ,kind and reassuring. There are a few consultants my last appointment was with Emma she was fabulous and has made several recommendations to my local rheumatologist. I have often called the scleroderma nurses for advice who respond quickly.
Hi, I go to The Royal Free too. I have never seen Chris Denton but he has a very good reputation and I am pleased to be seen by his team. The last time I was there in person I got chatting to a patient who had travelled down from the North of the Lake District to come to the clinic. 5 hours there and 5 hours back, she said. She had been seen in Manchester up to that point but was keen to make the journey to the clinic.
He also does the regular Q&A in the Scleroderma and Raynaud magazine. He does a Q&A at the annual conference too.
He is so knowledgeable and nothing is too much trouble.
I saw him regularly at The Royal Free and now I see Dr Emma Derret-Smith at the Birmingham QE. She ran aclinic with him in London and said I could see her in Birmingham which I now do as all three of my girls were at the University there.
I know I receive expert care by aconnected team and can go back to The Royal Free anytime.
I also receive lung treatment at The Royal Brompton.
I’m still alive and reasonably well after 20 years due to medical improvement and treatment of this disease. My original prognosis was poor.
Thank you to all you kind people who have replied to my post 😊All the information is really helpful and very reassuring. I feel privileged to be having my case looked at/be seen by him. As one of you said earlier… can make a small holiday of it if I need to go down and be seen. Best wishes to you all 😊
Hi, live near Edinburgh. I have met Dr Denton at a SRUK conference and he was very nice. I haven’t been referred to the Royal Free myself for my SSc but used to travel down with my father when he was seeing the liver specialist there. There is a very good Premier Inn very close by and when I was staying with my dad we met numerous ladies also staying that where at the Royal Free for SSc treatments.
Thank you, that again is nice to hear and thank you on info about accommodation 👍👍What airport did you fly into if that’s the method of transport you used?
We had to drive as my fathers treatment was nuclear therapy so he wasn’t to use public transport. Saying that patients came from Northern Ireland for the same treatment so I’m assuming if the flew they’d probably go to London City Airport or Luton.
Hi. I see him. To be honest his really good. He takes time to listen and understand you. So, I went to him firstly a few years ago and had to do the ECG (where they use the needles to.see how innflammed your muscles are), very hideous procedure and quite painful, especially if your muscles are innflammed. I was a wreck, could barely finish the procedure, was crying like a baby, fast forward last year and I was going for a normal routine check up at the royal free with someone else, they said I should go and see Dr Denton, the rhuemy I was seeing said very little and it was all a little rushed to be honest, so much so I didn't realise what I had to do till I got down there and Dr Denton said he did that on purpose as he knew how scared I was and hated the procedure and probably would have said no if o knew I was doing it lol. (Which is all very true) but he did it in a nice way and he is always very calming and nice and wants to help you. He is one of the best doctors o have dealt with in that respect, as he really does take his job seriously and really wants to help and listens. hope that helps. X
Thank you for your information. The same ‘tune’ seems to be being played throughout the many replies I have had… Professor Denton a lovely, caring doctor! All very reassuring to hear. Really sorry to hear about that very painful experience you had. What was the reason you had to go through that, if you don’t mind me asking?
Yeah, he is really good. I have fibromyalgia, lupus, Raynaud's plus other things. I am always in pain so they were trying to see if the muscles were swollen as you can't really tell just looking.
Ah, that is interesting. I have had really bad Trapezius muscle pain on one side for over 6 months now (lot of other muscle pain elsewhere) and unsure as to why this pain has been so bad. My consultant unsure if just muscle strain or calcinosis attached to muscle ?
Ok. Yeah if it's to do with the muscles and they think they are swollen or infammmed then to my understand they use this procedure as it goes straight onto the actual muscles and by the waves or something like that, they can measure or tell if the muscles are swollen. Not a nice experience but it does help and he is very calm and patient.
There was a very good Scleroderma doctor in Dundee at Ninewells Hospital. I don't know if she will still be there. I can't remember her name but she had the title of professor.
Maybe you could contact the hospital and ask you GP to refer you.
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