Hi
I spoke today to my doctor about positive results for ANCA and C reactive protein tests and the fact the blood report suggests I should be referred for review by a Rheumatologist for systemic vasculitis. I was very surprised to hear that the doctor can put forward a request for a referral but that a committee could block the request. Has anyone had their referral blocked and what should be done if the referral is denied?
I guess this is your GP?
In my area all GP referrals are reviewed before being passed to the hospital because too many were badly completed and lacked important information. I don't know if this is universal.
I also don't know if there is a fast-track procedure for urgent cases, which a vasculitis referral should be.
Hi Lavender-Flowers,
jgold makes a really good point that all referrals for ? Vasculitis should be urgent as it's a potentially life and organ threatening disease.
The referrals committee is for ROUTINE referrals not urgent.
I think your GP is missing the point here, ANCA isn't a routine test. It must have been requested because your symptoms were pointing towards some kind of auto immune disease. Here are the evidence based BSR guidelines for treating ANCA associated Vasculitis, I would print them off and take them to your GP underlying the part which talks about the need for timely diagnosis and treatment to prevent end organ damage. I would ask for an urgent referral to an appropriately experienced Rheumatologist or similar, get them to document the request in your notes and their response to it, including the clinical rationale for not doing as you have requested. Asking who will be held responsible if you develop end organ damage as a result is perfectly acceptable.
academic.oup.com/rheumatolo...
No one will care about your health as much as you do, sometimes we need to push and ask awkward questions to get the care we deserve.
Good question!
My primaries are infant inset systemic lupus and hypermobile ehlers danlos syndrome, plus several secondaries including common variable immunodeficiency (not due to my immunosuppression meds) and small vessel vasculitus.
I travel 1 hour each way to attend all but 1 of my multisystem clinics at the nearest university hospital in an adjoining NHS catchment area. I only attend my smaller local hospital 20 minutes away for eye clinic because the cornea expert is really advanced (his daily cyclosporin drops long term are stabilising me).
Every time i need referral to a new clinic, whether this is urgent or not, my GP warns me “they” may insist i attend my smaller local hospital in our area...each time i say to my GP: please remind the referrals committee that i am actively attending most of my clinics at the same neighbouring university hospital and that systemic disease like mine needs joined up multisystem care at the same specialist hopsital with tertiary care facilities.
So far i continue to be successfully referred to my university hospital in the neighbouring area...but i never take this for granted and am ready to argue my case for reconsideration should referral to my univ. hospital be denied.
In actual fact, just over a year ago, one clinic at my little local hospital recently successfuly referred me on for urgent tertiary care at my university hospital (gynaecology referred me to gyn oncology).
Am glad you posted. I hope you find Keyes reply as helpful as i do...because, basically, my impression is that Keyes rationale applies in my complex case too
🍀🍀🍀🍀 coco
These links from the NHS Choices Website explain everything you need to know here in England. nhs.uk/NHSEngland/AboutNHSs...
nhs.uk/chq/Pages/902.aspx?C...
Patients Rights in England -
citizensadvice.org.uk/healt...
The regulations for patients in Wales and Scotland are different.
Wales -
citizensadvice.org.uk/wales...
Scotland -
Thank-you for all the replies and helpful suggestions - I’m most grateful to each of you.
I have printed out the BSR guidelines and given them along with a letter to my GP practice stating my concern about the possibility of having the referal rejected by a comittee. I’m very worried as I’ve been ill for a long time now with lots of bits and pieces going wrong and occassional severe bouts of ill health where I’ve not been able to get to a GP to be seen.
I’m concerned that I’m treated as a time waster though in spite of the blood tests which show elevated inflamatory markers. I am also really worried because all my blood tests are marked as ‘normal’ on the computer system despite the immunologist pointing out that things are abnormal and that I should be referred to (several) specialists on several different blood reports over the past year or so.
I have autoimmune B12 defiency as well and everytime I point out positive GPC antibody and reduced B12 test there is stunned silence because the test is marked as normal. I don’t know if it is the GPs or the computer that is at fault but it does make me very worried that the practice is not keeping on top of things. Is this normal experience?
Good evenning Lavender-Flowers
Have you succeeded yet in getting an urgent appointment with an experienced vasculitis consultant?
I've read the English version of the links John Mills provided. Whilst it is excellent at describing patients' rights and how to process complaints, it does not seem to help you to get urgent specialist attention in the face of obstruction - be it intentional, or inadvertant because of lack of understanding.
You need to know quickly if you have vasculitis, because even if it has not caused too much damage so far it could turn nasty at any moment.
If you've not made the necessary breakthrough, then I strongly suggest that you phone the Vasculitis Helpline to find out your nearest vasculitis specialist. Unless the wonderful and very knowledgable volunteers who staff the Helpline advise some other course, I would then contact the suggested specialist by phone or e-mail and ask their advice on how to get an urgent referral.
Helpline Telephone:
0300 365 0075 - 8am and 10pm,
I hope these thoughts are no longer necessary - but if they are then I hope they help.
Hi,
Oh thanks for thinking of me!
It seems that the application for referral was only completed on Friday and I guess still has to go through the committee!
I did print off the guidance kindly suggested here and submitted with a letter expressing my concerns but to no avail. I did however have my annual blood test on Friday and I noticed one was an immunological one so I can imagine it’s something stupid like if my counts are up I’ll be referred quicker.
What I’m now worried about is the speed up in some of my symptoms. I’m having pain nearly everyday now and found it tricky to hold a mug of tea last night because of pains in my joints. I was thinking of posting a question here about handling joint pain because it’s unpleasant to say the least and scary how fast it’s become an issue.
P-ANCA and MPO - not yet diagnosed and extremely anxious
immunoglobulin replacement therapy 
So much weight gain, moonface and facial hair
Route map for vasculitis
