Does anyone know
1. Are there any GCA fast track hospitals in London? How can I find out?
2. Could a London GP refer to the Southend fast track system? Can I ask for that if there is not one near to me?
I strongly suspect GCA but have not been able to speak with GP. In another thread I said the rheumatologist told me that my present 10mg Pred. is sufficient to keep eyes safe - I don't believe him.
I would be grateful for any advice.
I did a quick google of your question and found Newcastle, Bedfordshire, Oxford, Birmingham. I guess if you placed yourself in the vicinity they would treat you. It’s awful that you feel so insecure. Speed is of the essence if you are experiencing GCA symptoms, as you no doubt know.
Hopefully others know much more. The treatment is fairly straight forward once you get to a good medical facility with an knowledgeable doctor. Paramedics have apparently received training in the emergency treatment of GCA. Not sure if this is universal. Good luck!
Thanks muchly.
I found those - too far away. You will know about Southend - it's 40 miles from me but who's at the end?! Dr Dasgupta! I'd be quite happy to make the journey.
I wonder about Imperial College London?
What about a diplomatic phone call, his wonderful reputation, the lack of experience where you are currently, your fear etc.?
Jane,
Not sure it’s quite as easy as that.
A lady I know who has had lots of issues with her GCA and treatment contacted Southend, but was told that as she hadn’t had her GCA diagnosed by a biopsy (by GP) Prof Dasgupta wouldn’t see her.
Whether that’s his policy or just a one off incident I don’t know, but she was very disappointed in the response.
I expect you’re right. On the very rare occasions that I have subverted systems in my life it has worked well for me. Nothing ventured etc.
Thanks SheffieldJane
Who to? The main man himself? Don't know how to do that. But this would harm the relationship that I have with my GP I think. For your interest my GP and I have a good friendly relationship to the point where I can pull his leg about his fundamentalist religion (he knows I gave that up some years ago and he's praying for me, he says. What?).
But, to repeat myself: when I presented with PMR in January my GP was not available and I saw a young new doctor who, on the basis of blood tests and the fact that I have a sister who has PMR, diagnosed PMR very quickly (she left to have a baby), subsequently to be agreed by my GP. So I don't actually know the level of skill in my GP. Whatever, there must be another GP in the practice who knows about PMR/GCA surely? And I suppose my GP can always consult outside the surgery if he needs to.
I have wondered about contacting the Rheumatology Secretary to my Consultant and asking her for advice. They might even have a fast track at Barts Health Trust?
But then there is the question about the skill levels of those who do the biopsy or ultrasound.
For today, I think I will wait to see if my GP calls.
Just to add a small point (which could be colouring my desire to go to Southend?): my wife and I have been sort of surrogate parents to a woman for over fifty years and she is now very near to death in Southend. So although we wouldn't be able to 'meet' her we might be able to say 'goodbye' through her nursing home window.
Thanks again.
I am so sorry to hear about your surrogate daughter. Take care!
Under normal circumstances you could be referred to Southend - in England you do have the choice for first referral to a rheumatology department.
Can't even say go privately once - because I THINK there is no private work being done during the crisis.
A quick trawl of the Barts website makes it sound as if their "things" are inflammatory back pain and lupus. No mention of vasculitis that I can see.
Vanessa Quick has a fast track pathway at Luton & Dunstable:
"Dr Vanessa Quick, Consultant Rheumatologist said, “Our pathway aims to provide rapid access to a specialist rheumatology assessment, temporal artery ultrasound and biopsy for all patients with possible GCA. We know this approach can dramatically reduce the rate of sight loss in GCA. It can also minimise the impact of high dose steroids in those who don’t have the condition, because tests such as ultrasound and biopsy can only reliably rule
in, or rule out GCA, if done within a few days of starting steroids”. If GPs are concerned about a potential case of GCA, they can urgently refer their patient via the rheumatology nhs.net email, available from the Luton Rheumatology secretaries."
Thank you so much. I note that my rheumatologist specialises in 'adult and paediatric' which might mean less skill in PMR/GCA, I suppose, especially given his advice about 10mg Pred.
This would imply that my GP, if he suspects GCA, should start me on high dose Pred and refer me for fast track - which is likely to be Southend as we are not near Luton (that's norf o watford ain't it?!
Yeah - not quite the north, it starts at Watford Gap ...
However - Luton is closer to London than Southend. 
DorsetLady. Just seen your post and thanks. But if there is no fast track near me, surely my GP cannot get a biopsy within short enough time to get a biopsy? Also, I have no idea whether the skills of biopsy technicians extend to GCA in this area, apparently it is a skilled job. Or am I thinking of ultrasound?
But, yes, I'd be prepared to go to Luton if necessary (it's further from this side of London BTW). 
The biopsy is done (hopefully) by a vascular surgeon but often a general surgeon will do it. That means it is available in any hospital - the primary problem then is to get it done in a timely manner. Good hospitals will try to fit one in but often it means a wait for a space/surgeon being free. If the patient has real symptoms of GCA they should be on a high dose of pred, not waiting for the biopsy, and if that is more than a few days the likelihood of getting a positive falls even further. At present it SHOULD be possible being as there isn't much surgery going on! OTOH - how enthusiastic are you about spending a few hours in a hospital???
Ultrasound, is done by technologists if there are trained ones available, that number is increasing but in some hospitals it is done by the rheumatologists who were part of the TABUL study comparing the results of u/s and TAB. When the Luton fast track was set up it was Vanessa Quick but they were aiming to get a technologist trained.
You just mentioned Barts, that's in the middle - I worked there for a time
Thank you PMRpro. That clarifies things for me (I've been doing so much reading that I get confused). It helps me to be clear when my GP finally calls. I will try to ask the right (loaded) questions.
It is not an attractive option to be in A&E for hours but I can't seen an alternative - it's either that or risk loss of sight or stay on high dose Pred for ages. It seems to me that time spent in hospital is likely to be less waiting for a biopsy than going to A&E for assessment.
I'll post here when I know any more.
Meanwhile, thanks to all for the helpful advice.
Your GP should be able to arrange an emergency appointment at A&E - here at present the GP calls the hospital so they know you are coming if you aren't in an ambo. You get there 10 mins before the appointment time - for screening and to be masked and hands disinfected. Don't know what the UK is doing but I'd hope it was something similar. CV patients are isolated on the infectious diseases unit but you have to assume everybody you meet MIGHT have it! But it is as safe as it can be anywhere.
Always ask here first - it can save a lot of time and confusion. We've been practising for a long time
I read the other day that Northern Italy has an excellent record for doctor/hospital care. Would you agree?
Probably don't mean here!! They usually mean Lombardy - which does have a superb medical system, they have lots of money and Milan/Turin are international centres like London or Berlin. That was why they were so surprised at Covid-19 bringing them to their knees - the one hospital makes UK hospitals look like Lidl compared to Waitrose But it was sheer numbers.
I think here is pretty good but like everywhere we are short of doctors and nurses - partly due to the fact they are officially all supposed to speak both languages. We'd be fine taking on just German speakers who then learnt Italian but Rome won't have it. They are happy for doctors to work here even though they only speak Italian - which is a serious problem for many elderly locals who refuse to speak Italian. Given their history it is hardly surprising. I don't mind providing they can cope in English - but it is my legal right to have a German-speaker. Always someone to interpret but that isn't ideal.
👍
Thank goodness it's so very easy here - only German. I know more German expressions/vocabulary in the medical world than I do English. I struggle through some appointments but a lot of the expressions are in Latin so we usually muddle through.
I suppose latin helps here - aber meinem Latein ist zu Ende! Or to be more accurate - it never began
Sorry to hear you’re worried.
I’m surprised there has been no mention of Moorfields Eye hospital in London. Open A&E 24 hrs as far as I know.
I certainly visited them last year following a severe reaction to an infusion I was given. They certainly seemed to know about GCA and were able alleviate my fears by explaining why it wasn’t that. You do have to wait a long time in the waiting room so don’t know how that is being managed given current circumstances. But if it is still working you feel very safe with them as they are the number 1 eye hospital (in the world) I think. Good luck.
Can I direct you to a reply from keeptalking at the end of this internal thread which you may not have been notified of as it was replied to me:
"Sorry to hear you’re worried.
I’m surprised there has been no mention of Moorfields Eye hospital in London. Open A&E 24 hrs as far as I know.
I certainly visited them last year following a severe reaction to an infusion I was given. They certainly seemed to know about GCA and were able alleviate my fears by explaining why it wasn’t that. You do have to wait a long time in the waiting room so don’t know how that is being managed given current circumstances. But if it is still working you feel very safe with them as they are the number 1 eye hospital (in the world) I think. Good luck."
Your GP can usually refer you but not sure in the current climate. Prof D had been my consultant for 6 years before moving and I would recommend the journey eastward rather than Luton if possible. He does Ultra Sound but unless you pay private.....even so they usually still ask for a GP referral.
You could ring his secretary to ask procedure at the moment. You can PM me if you want contact details.
Also 10mg is no way enough for suspected GCA. More like 50/60mg but without knowing your history couldn’t say.
I would second the earlier recommendation of Dr Rod Hughes in Chertsey, Surrey. He is my Rheumatologist and is brilliant. He works out of St Peter’s and also privately at the BMI Runnymede.
Consider speaking to some specialists outside England who may be ready to do an online consultation. I mean there is no way 10 mg can keep eyes safe in my opinion. It is too risky if you really do have GCA after all and time is of absolute essence.
That is a rather pointless exercise - you still have to get the prescription for corticosteroids. And I personally wouldn't trust a video consultation from someone who doesn't know me or have any access to my medical records.
Completely Agree that it is not the ideal and best option . But then if there a delay then it also exposes the patient to the danger of losing eyesight ...... At least if one has a diagnosis from a well respected medical expert even if from another country , based on existing test records it might hasten the response from the local docs ?
Doubt it - just because someone is well respected in one country it doesn't mean they have ever been heard of in another except to a very small group.
What worries me is that this back and forth , is a luxury with the eye issues of China wuntoo . 10 mg is too less for sure.
Moorfields hospital in London has an A&E dept you can go there without an appointment I was seen there’re last week as my rheumatologist was concerned with my headaches and blurred vision .I was seen promptly and tested and fortunately they said it’s not GCA .
Also very safe ,social distancing
I was diagnosed with GCA. I was rushed onto 50mg pred as they had taken so long to diagnose it. There is a protocol for the diagnosis and treatment of GCA. I haven't read it in a while. I think I recall it recommending that between 50 and 60 mg was recommended initially. Does anyone else have access to this document. I probably have saved it in my files somewhere. The PMR charity sent me them I think.
Thanks again everyone. I've now seen all your responses. Obviously I am concerned about going into central London - the Underground - but I could get a taxi to Moorfields if it becomes advisable to go there. Actually I hate central London, but that's by-the-way.
To lighten a bit, here's a joke that is not a joke: I heard advice yesterday (not Boris this time) saying "On the tube stay 6 feet apart and face in opposite directions. Unless it is crowded." Where are these clowns living?
Back to the point. I now have spoken, at last, with my GP. I had to be firm (he's ok with that but I do wonder what his skills are with PMR/GCA). There were some good points - I'll leave the other questions to one side. He has sent me for the usual ESR and CRP tests and said he would refer me for a biopsy if they are still raised (70 and 44 at beginning of April). I argued (successfully?) that my headaches are not due to stress (although I am anxious). He acknowledged that GCA doesn't necessarily manifest itself with raised blood tests. Yesterday I had pains in my face/ear/jaw. I told the GP that it seems to me that the various symptoms of GCA are gradually manifesting themselves.
On the question of upset stomach he agreed with me that it must be risedronate and said it will sort itself out in time; I really hope so. He will change it if I still have it in a couple of weeks.
I remain very sure that I will present myself at A&E if I develop eye problems.
Terrier61: can you say what tests you had at Moorfields? If you had a biopsy and/or ultrascan this would seem to be a visit similar to 'fast track GCA'. If so, that is a comfort to me as a back-up possibility, perhaps mentioning it to my GP. If you had tests for sight-related issues - with diagnosis on basis of those and not biopsy or ultrascan - I don't see how that would help me. I don't have sight problems. But I do not want them to start - as I told my GP - sometimes it can be too late, the damage is done, or so I believe.
I am hearing very clearly those of you who are saying 10mg is not enough to avoid problems if I have GCA.
Thank you all again.
Singr: do you mean the recently published Guideline? If so - on-line is here
I am having headaches and blurred vision ,no jaw pain , and no tenderness on temples.Moorfields gave me numerous eye tests and questions relating to where I was feeling the pain .They put drops in my eyes and looked into the back of my eyes,I saw three different doctors and they were aware I was concerned it was GCA as I have PMR.
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