This is such an informative and helpful thread. I am going to "tack" it to the top of the forum so that it won't float away over time.
And Mandy. PLEASE tell us how your saga has worked out. Are you under Mr. Dick's care yet?
Phil, thanks for your insight into this. For those who may not know about the UK web site set up by Phil Hebbert (also a patient), please check it out. It is a valuable resource. Uveitis Information Group (UK)
Re: Referal on NHS for Jenny, Anne & Matt
Hi For anyone following this thread, you may be interested to hear of the Uveitis Information Group's next open meeting.
It is in Bristol and just happens to feature Prof Andrew Dick who will be speaking and answering questions.
He is well aware of referral problems and is working with other uveitis specialists to change things for the better. Whilst he can not speak about a specific case the subject of referral procedures will be covered at the meeting.
The meetings are very positive and Prof. Dick is always keen to listen to patients views.
The meeting is on Saturday 19th November 12.30 to 4.30 and if you are interested in coming along, then please get in touch via our website (follow links to Bristol meeting) or email me on info@uveitis.net (see below)
Mandy I sincerely hope that you will be well on course to getting on top of your uveitis soon, - Im sure you will be in very good hands with Andrew Dick and I would be keen to hear how you get on.
Best regards
Phil Hibbert, UVEITIS INFORMATION GROUP, UK. info@uveitis.netwww.uveitis.net
Re: Getting that referral and playing the system
Hi Mandy,
Like Matt, I hadn't realised how long it had been since I had visited this part of the site
I hope by now that you are getting the correct treatment after all this time. I had the same sort of experience with NHS hospital, seeing someone different every time and I won't even comment on the last time I went except to say they didn't know why I was there! Long story...
I found this site thankfully before too much damage had been done and went to Mr. Ayliffe but privately. Best move I ever made.
Re: Getting that referral and playing the system
Well I went to see Prof. Dick last week. He is a lovely man with a very knowledgable and well organised team. They took loads of photos of the backs of my eyes, took my history and asked lots of questions. I then had half a dozen trainees looking at me as they all discussed my case. I am apparently unusual and have lots of 'punched out holes' in both retinas. Toxoplasmosis and Sjogrens syndrome were mentioned as possible causes but then dismissed as I don't show many of the symptoms.
He has decided to keep my treatment the same, 1 drop of pred forte to both eyes once a day, as my left eye is quiet and the right had 3 cells. He also agrees with my local consultant that the side effects of oral steroids outweigh the benifits for my slightly rumbling intermediate uveitis at the moment, but he is also going to write to him with some reccommendations.
I feel slightly dissapointed that he could offer no answers and no hope of coming off the drops, perhaps I was expecting too much! But I do feel reassured that if I have a major flare then he will be there for further advice and if necessary treatment.
Re: Getting that referral and playing the system
Sorry Mike,It's not as bad you think, on rereading my post I realise I missed out an important piece of imformation,(It was late, I should of been in bed! ). I was told by the doctors that the punched out holes in my retinas are old damage and no longer active,which is good news, isn't it?
Re: Getting that referral and playing the system
Glad to hear things are under control from your point of view.
I think the main thing is that due to Prof Dick's expertise and experience, he is extremely undlikely to 'miss' anything. Instead of worrying what is not being done, it now becomes more a question of trying to understand what is going on.(not always straight forward, of course).
I'm not going to attempt and diagnosis but it may be that you have panuveitis and so will require drops for some anterior inflammation but also have inflammation problems furhter back in the eye. This would explain the apparent contradiction with the drops as treatment for intermediate or posterior inflammation.
It does sound as though from what you are saying that the areas at the back of your eye are 'old' areas.
Close monitoring is obviously important and you shouod be in a better position now to feel that this is being done.
If you don't feel right or unsure about what is going on, tben you always have Prof Dick to go to and he wijl not hesitate to 'keep hold of you' as a patient at Bristol if he feels he would need to see you all the time.
cheers
Phil Hibbert
Re: Getting that referral and playing the system
Dear Mandy
I just read your post as I don't often look in on here (I have had uveitis for far too many years and these days prefer to get on with life and keep it as a side issue as best I can-years of worry have done nothing!).
Anyway, I agree entirely with Phil Hibbert, Prof. Dick is absolutely excellent and is very unlikey to have missed anything or have you on "old" treatment. From your comments about oral steriod risk being greater than benefit in your case, he obviously has ideas of possibly including something else e.g. cyclosporin etc. to try and help reduce the oral steroid dosage. This is of course, patient-dependent.
I used to see him in Aberdeen where he trained with Prof. Forrester (who I see) who, along with a few others incl. Prof. Foster in Boston, is a world expert in the area. He too is now a leader in the field of uveitis involved with leading edge research, and has many relevant publications. I have seen many many eye specialists over the last 19 years (as Aberdeen is a major training area for them in uveitis), and he was one of the very very few who I trusted and really knew what he was talking about. (I was also involved in a couple of projects at work for the pharmaceutical industry for new treatments etc. in uveitis in Europe/USA so I know who the experts are!)
Hope all goes well for you now and you too can get on with life without having the worry of receiving substandard "care".
Re: Getting that referral and playing the system
Hello Adrian, I too was treated by Prof Dick in Aberdeen and agree entirely with your comments. I also dont post on here very much, as, like yourself, kind of try to just get on with things and am lucky that I have been in remission now for 5-6 years.
Regards, Nicki (Cornwall)
). I was told by the doctors that the punched out holes in my retinas are old damage and no longer active,which is good news, isn't it?
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