Open Consultation with Doctors and Patients with Experience of Giant Cell Arteritis

[Suzym2u]

Open Consultation with Doctors and Patients with Experience of Giant Cell Arteritis

British Society for Rheumatology and Royal College of Ophthalmologists Giant Cell Arteritis Guidelines Group.

Follow this link for more details docs.google.com/forms/d/1SM...

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Questions I would like to ask?

How many patients who have a Temporal Artery Biopsy are placed into drug trials?

How much money do doctors receive for placing a patient with confirmed GCA (by TAB) on a drug trial?

Why is there so much mystification (for this read manipulation) about Giant Cell Arteritis? (Doctors are not even understanding that Arteritis caused by GIant Cells can affect any large or medium artery and only when they affect the termporal artery is it called 'Temporal Arteritis)?

Why is it so difficult to list symptoms, the necessary blood tests, scans and treatment pathways?

Why do doctors drive down prednosolone dosage despite patients having headache, scalp tenderness, neck discomfort, etc.? Do they not realise that GCA can increase risks of stroke, heart attack, dementia and other dangers associated with damaged arteries?

Why are there such huge differences in treatment between an NHS patient with suspected GCA and a private patient with suspected GCA? (for example, stroke risk assessment, heart monitoring, regular diabetes and blood pressure checks; concern about heart pain and palpitations, severe breathlesness, high blood pressures in peripheral limbs, leg claudication, blood in urine, etc., etc.)?

Is it not serious that patients in care homes with Polymyalgia Rheumatica or symptoms of Giant Cell Arteritis symptoms are not being properly cared for by their doctors and blindness and deafness are being put down to a CVA?

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Susie, I hope I am not hijacking the thread.

May I ask one question? Can one patient be ANCA-negative for small vessel vasculitis?

[Suzym2u Moderator Vasculitis UK in reply to Hidden]

yes you can be, I know a few who have never been ANCA positive.. even when relapsing... my John is always ANCA positive even when he is quite well hope this helps answer your question ferntree

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Thank you so much, Suzy. I'm slowly learning..

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WMTuk

I sense your frustration. May I ask if you are already diagnosed with GCA or vasculitis? The following paragraph caught my attention. I get heart pain and palpitations, breathlessness...etc. Difference in NHS or private treatment.. Is this your direct experience? I openly admit that patients do struggle to get the care many of us need on NHS. I hate to come across as someone who's deeply negative about NHS..there are good things. Having said that I recently had to speak to GP surgery manager re. my GP not doing what my consultant suggested her to do for some time. I am acutely aware it's something to do with her "budget". If I was paying for my insurance (as in the US), I would have had all the expensive labs / scans straightway and no one is getting grumpy over it. In UK, it probably would take about 10 years to have all these tests done unless you would be able to work the system (for example, your relative is a GP to cut the queue). If you are dying in an advanced stage of the disease, then NHS would probably have to intervene. I'm sure some people do die as a result of delays in diagnosis (a typical example: cancer-related deaths) in UK. We are far more aware of what other patients are getting (in terms of both diagnostics / treatment) abroad via social media (e.g. US, Japan, EU etc) , it's difficult not to compare..

"Why are there such huge differences in treatment between an NHS patient with suspected GCA and a private patient with suspected GCA? (for example, stroke risk assessment, heart monitoring, regular diabetes and blood pressure checks; concern about heart pain and palpitations, severe breathlesness, high blood pressures in peripheral limbs, leg claudication, blood in urine, etc., etc.)?"