Consultant requested the doctor, after a wait of 3 months, I be retested after a positive p-anca blood test. Nurse took bloods and I rang for result to be told not done due to technical issues? Ok so queried and asked what was technical issues. After several calls to health centre over approx 2 weeks was told it would be done but I did not have to go to get blood taken again, they would use previous sample. Came back negative. Made app to see doctor to query situation who told me he himself stopped the test! Said he did not have to carry out anything consultant requested!? I felt so shocked, confused and let down sitting in his office being told this. Why would a supposedly caring professional do this? I'm still trying to get my head round this. I told him I felt that he did not care or believe that I was unwell. The outcome was that I told him that I would not be going privately as I had used up all my allowance on tests and so reluctantly he is going to refer me through NHS. Still can't believe his attitude.
Doctor v Consultant: Consultant requested the... - Vasculitis UK
Doctor v Consultant
my husband who has WG was told by his GP to 'go away & forget you've got this illness' mmmmm, interesting diagnosis
That's terrible. I believe some doctors don't know much about vasculitis and just how serious it can be for the patient. I don't think the doctor I am seeing knows much about it. I think I only got referred as he was fed up seeing me. 8 years from my first hospitalisation with symptoms getting worse and he couldn't put it all together. Your husbands doc seems to have same attitude. Hang in there.
GPs don't know much about most rare diseases - but what is far worse is that at a "certain age" (and I assume with a tag of 1957 that's your birth year?) far too many GPs classify anyone who turns up repeatedly (because they didn't do their job properly the first time) as "menopausal problems", depression" and other "mental problems" or attention seeking.
In your situation I would first "interview" other members of the practice, if that is unsuccessful, seek another practice where someone will actively help you. I would also make an appointment to see the practice manager and ask for information about how to make a complaint. If they are unhelpful, try the next layer up - since the reorganisation I have no idea what they are called any more (I don't live in the UK any longer).
To be honest what amms43 says further down doesn't surprise me in the least - we have experienced care here in Italy that resembles what the NHS was 20 years ago. We both worked in the NHS, both daughters still work in the NHS. We weep at what has been done to it.
I find there is a lack of communication between hospitals , and if a Dr doesn't no anything about ur Disease. ( I have TA ) they give the impression they don't really care. Not good for us patients !
I don't know if 'hang in there' is the right response. I haven't had any issues with our doctor but we have recently changed practice which was relatively painless. Before we moved I looked on the website and Wegeners was mentioned so I felt reasonably happy to move. Maybe ask on here / Facebook if anyone has a sympathetic GP nearby. While it gets the current doctor what he wants, YOU are the most important person in this and you need to do the best for you.
I was not diagnosed for 7 years but was recommended to have cognitive behavioural therapy because I worried too much. I was only diagnosed by going privately to various specialists. When I started my first course of cyclophosphamide I went to se my GP and asked if he would be available if I needed him and did he have any knowledge of vasculitis. No he said, he didn't, it was rare, complicated and he didn't have time to learn.
In France recently I suspected I was getting an infection in my foot. I told the local pharmacy of my problem and they gave me the name of the nearest GP who saw me within an hour, was very knowledgeable, sympathetic and matter of fact.
My 'designated' GP spent about three years telling me that my problems were due to my age, my imagination, etc. He did concede that I had fibromyalgia, but that there was nothing he could do about it because my blood results were within normal. Since being diagnosed (TAK) I've switched to another doctor within the practice. It's caused no problems as far as I know, and she is completely supportive, and happy to tell me that she is learning a lot! Her senior partner also rang Addenbrookes and talked through my case with them, so I have an alternative person that I can see and feel safe with. It seems to depend on personality as much as anything....some GPs are happy to learn about rare conditions, others like to go through the same old motions.
If you see the practice manager, perhaps you can talk through the problem and work out which GP is most likely to be prepared to accept that they don't know everything?
I don, t knowwhy your consultant didn, t carry out test, put your faith in him.if I have any problems I contact the consultant.I have m p a .my doctor is not well informed either about vasculitis.sometimes you need to push (in a good way) to get what you want.I see a consltant every 3 months, get bloods and tests done. 2 weeks later a letter comes through the mail to confirm everything. I can, t ask for better treatment. His base is 75 mile away.but its works for him and I.
Went through same sort of thing with husbands M.E. and now I am a year along with a misdiagnosis from a ' specialist in dermatology GP' I was referred to who was very sarcastic when I gently tried to explain why I felt she may have misdiagnosed ( she'd spent barely 5 mins with me )- she said it was chronic folliculitis- told me to go and look it up on 'dermanetz' website if I wasn't convinced. My own GP at the time was brilliant regarding M.E. Had tried to get ball rolling to rule out vasculitis with a blood test and referring me to the specialist one - but left the practice before I'd actually been seen. She had left because the way the practice had changed had made her feel she could not be the dr she wanted to be due to arguments over costs and inner politics. As a family we really miss her - she listened and took you seriously and was always wiling to learn. It is good to be your own expert and be as informed as possible but it is disappointing and even dangerous when some drs take this kind of attitude. A GP can't know everything - but you at least expect co operation with someone who knows more such as a consultant. I think contacting the consultant is a useful suggestion and find a new GP!!!
Must be common in dermatologists! I saw one about an intensely itchy rash that could have been a form of coeliac disease and she was so rude and dismissive. She insisted I had to eat wheat for 6 weeks prior to the test as if it was my fault I hadn't - noone had told me but if I had I'd have been in agony. In fact the test depends on obtaining a specific finding in the NORMAL tissue, not the lesions. The nurse was nice and asked should she reschedule the test "No, it's not urgent - it's not CANCER", giving me a filthy look. Needless to say, I didn't go back, discussed it with a gastroenterologist specialist who said just to carry on what I was doing: not eating wheat!
There is a scheme to educate patients about their illness to become "Expert Patients" about their particular needs and management. Guess what: they then struggle with both GPs and hospitals who ignore them.
Not sure how you deal with it except shopping around for a GP - and if there is only one practice where you live you've got a problem.
Yes - I was encouraged to be an 'Expert Patient ' in regard to my diabetes. That is not a rare condition like vasculitis or poorly understood like ME - but I was shocked at the level of ignorance among doctors and nurses about even basic information on diabetes management. Vasculitis doesn't stand a chance!!! The thing is - even if a doctor admits to not knowing much about a condition and genuinely cannot devote the time to learning more they can at least be supportive. One of the GP s we had for a few years knew little of ME but tried hard to validate my hubby's concerns and did not patronize or imply negative views.
I was discussing the "expert patient" with a research rheumy and she gave me the report that had just come out about the problems. Basically: arrogance on the part of healthcare professionals who should have known better: GPs refusing to prescribe extra test sticks for more frequent monitoring to keep someone out of hospital and hospital staff who did things just plain WRONG. You're right - we haven't a chance.
I am very lucky, my GP here in Italy worked in rheumatology and knows I know as much as her about PMR things in general and more than her about me. There is far more published in English than in German or Italian of course - so I tell her the edited highlights! And in fairness, while the GP in England didn't know enough about PMR to make a clinical diagnosis he would use Google to find out about things he didn't know a lot about. Another colleague was the PMR expert relatively speaking - but she never had time to discuss any queries and the rheumy I was sent to was an idiot of the first order. I had to become expert - I've read most of the papers!
I like to research as much as I can about any condition that touches my life either directly or say family friends residents in the care home I work in- If I can find professional stuff I am keen to read it even it I struggle with the jargon and science at times. Some don't enjoy this and basically prefer to leave it in the drs hands. It a shame that it may be unwise to do so at times.
I'm not sure it is just not enjoying it - there remains a touch of "they are so clever and know it all" on the part of a lot of patients. I've probably offended someone on another forum because they effectively said people shouldn't question anything the medical teams say or do. Both I and my husband could be dead if we hadn't questioned the received wisdom of the medics. Instead of a simple chest x-ray he was handed an asthma inhaler when antibiotics hadn't made any difference - he'd had a cough for about 3 months by the time the rugby ball sized tumour was found. It would have been a lot simpler 6 weeks earlier!
Oh yes I quite agree! I wasn't meaning it is just that at all - many certainly put drs on way too high a pedestal.Was just making an observation that many prefer the dr to be the expert because they think gaining the knowledge is beyond them. I like to view it as a partnership and that medical professionals are offering their services to support people in looking after their health - if that is knowledge they have that is great but if it means learning together that is fine too. I am wiling to learn, that's why I research in the first place so I expect the same from them. If they can't because they can't be expert at everything they refer to someone who is and bring their knowledge to the team- which is why the GP in the original post is behaving unprofessionally. However just like I should be allowed to question my GP it is reasonable that a GP may question a consultant at times.I just think refusing to carry out what a consultant has asked for will be down to money or some other politics not a serious qualm about the consultants medical knowledge. Working in a care home we come across this sort of thing often - no one wants to foot the bill for a test or whatever. A GP is a 'General Practitioner' so they are supposed to have a general knowledge- a broad spectrum of fundamental knowledge so they can treat or know who to pass us on too. They aren't supposed to be 'know all's ' so shouldn't be viewed as such or think they are such. There are some brilliant drs who are also very humble. It can be done!
Of course it can - I've seen both sides too. We must be twins separated at birth!!!!
Make a complaint. Change GP and ask your consultant' s secretary if an appointment can be arranged to avoid the middle man arrangement.
My GP knows nothing, I see another partner at the practice who has been happy to see me as she has one other female recently diagnosed with WG, it makes life easier all round. Good luck and sorry to hear you are having such a stressful situation on top of your illness.
I was incredibly fortunate to have a doctor (not my own GP) but one at the practice who realised that things for me were seriously wrong and booked my place in hospital.Again I was fortunate to being of interest to a specialist Consultant who saved my life.
Change your GP it is very easy, as I understand just walk into another Doctors and ask to register there.
Best wishes.
I suspect it's a worldwide problem in that most countries do not offer enough time in training medical professionals about complex autotimmune disease overall. Here in the USA, specifically New York City, is home to top specialsts and yet I am at a loss for a realistic "cure". To further complicate matters, given the array of overlapping elusive autoimmune diseases,( vasculitis, CNS in particular), is on the *rarest of the rare* list. After two decades of seeking help from various areas of the medical community, I must say I don't believe the average consultant, nurse practitioner, or a physician's assistant is anywhere near knowledgeable enough or experienced in this field when it's evident that the most educated physicians are at a sad loss on how to properly treat a rare disease such as CNS vasculitis. I actually had a Rheumatologist have a look at my blood test results several years ago and remark "Eww, I don't like treating this... no one ever gets better". Yes, she indeed said "Eww". Need I mention, I never returned to that office.
Dear Linmur1959,
I'm just trying to imagine/envisage what my Consultant would have said, about this. I'm sure that he would have carried out the tests himself before having 'words' with my Doctor.
I base this on the fact that, when he requested a test be carried out, in another department, and it wasn't........Let's just say It was all done the next week! have you spoken to your Hospital Doctor(s)/Consultant(s)? It might be an idea, well worth a try anyway.
Good luck and best wishes.
AndrewT
Cannot believe that - the fact they didn’t even say they were not doing the test is frightening.
Any advice or help? A difficult time since February (Vasculitis)
Vasculiitis specialist consultant 
Is vasculitis life threatening?
Worried about my Dad
Newly diagnosed with leukocytoclastic vasculitis
