I need some clarity please preferably from a medical professional.
3 years into my microscopic polyangitis I’m still baffled of which doctor to approach for certain medical issues; ie, nerve pain, fatigue etc.
I’ve heard the comments from general practice like your under a specialist you need to contact them, your a complex case and your under specialists( there is nothing we can do for you )
My Rhumatology consultant seems out of reach and on a pedestal, my general practice doctors haven’t got a clue what to do with me.
the NHS are alienating me with their refusal to even examine me. I’m baffled who to turn to for a certain issue. The NHS is on its knees which is systemic. It’s underfunded and understaffed, I suffer in silence because I don’t want the responses I’ve had from many doctors.
It is very frustrating. I'm afraid, though, that with such rare diseases as you (and I) have, it really is hard for the medical community to figure out who's in charge. Hopefully, this will sort itself out in time. You may have to switch docs (if you can) til you find someone who "gets" it.
My husband's GPA Vasculitis started as the sinus, nose bleeds, fatigue route. It has caused many other problems since then like triple heart bypass, avascular necrosis (2 new hips, 2 shoulders needed) squamous cell carcinoma, ulcer on head, burning nerve pain in foot, calcification of legs and many others, ears, eyes, ulnar and on and on. Each time a part of the body goes wrong, his Vasculitis consultant has no influence on any treatment, so we call the GP, tell them why and ask for the appropriate referral. We wait unless something becomes urgent enough for A & E. I'm pro-active in phoning the depts with the referral reference, tell them we are available for cancellations, go to secretaries and ensure they remember us because I'm nice, complimentary to them, anything so they may just remember the name. We're 12 years into this so I'm a bit of an expert at working the system but then I'm retired and spend a lot of time on my husband's care. It's an ongoing process and nothing will ever be quick here. On the note of underfunded and understaffed, I don't believe it is. I believe it's overstaffed in the wrong area's where money is leaching out and there's too much covering arses. Hey ho, good luck, just keep pushing.
"On the note of underfunded and understaffed, I don't believe it is. I believe it's overstaffed in the wrong area's where money is leaching out and there's too much covering arses"
I live in Ireland and that is absolutely 100% correct here as well. Pouring money into a black hole. I also have Wegeners/GPA since 2010. Personally, I'm lucky with GP, respiratory and renal consultants from a bad start with a misdiagnosis from an ENT guy which delayed correct diagnosis. Spent 18 days on life support in ICU in 2010
Well Said re NHS funding! + Thanks for every detail re your patient advocate role! I’ve been playing this role for myself for many many years & had to learn the hard way how to get the attention I need…wish I could clone yoi!
WOW! I say the same thing: the $$$$ goes to the fancy diseases! Your husband is lucky to have you. Nice job "working the system". You need tp write a blog!
I was referred and accepted to the pain clinic. It took over 12 months to get in. He won't touch me unless the specialist approves. Geee, guess what the specialist said...
What did they give you in terms of medication and help ?
They have suggested pain relief like amitriptyline, but the most help I got was to learn to listen to my body, pace myself and relax my body so the pain won't be so intense. It is not easy, but I am definitely better pain wise.
Firstly we are not medics on here that is not the idea of this forum. When I got frustrated with the care at my local hospital I asked my doctor to refer me to the specialist centre at addenbrookes. Ten years on and I’m still there with a MDT consisting of vasculitis consultant, respiratory consultant, immunology consultant and ENT doctor. I know that if I have problems I can call the specialist nurses. I have done in the past and have got the help I need. I don’t rely on my GP for any of this except in the past when I had a severe infection. I do see pain management locally as that is related to back problems. Some of the pain that I thought was related to vasculitis is actually caused by my spinal stenosis. I believe the helpline can give you an idea of specialist doctors near where you live. I have to travel for my care but it has been worth it. I hope your problems get resolved soon.
Mooka, Please do not admonish us because it is almost IMPOSSIBLE to find a specialist that is familiar with the disease. Getting an appointment is near to impossible. Yes, I am going to ask "medic" type questions. From the other areas of this site, Health Unlocked, there are lots of comments/suggestions/FAQS for medication regimens and treatment plans. I am happy that you have a nurse system that works for you, that means there is hope! From a review of comments here, the majority of us to not have a nurse system, we are REQUIRED to use a GP and play the vasculitis carousel and get passed from doctor to doctor, etc. We are doing the best we can with what we have. We are not being lazy, or unmotivated, we are being sick and dealing with a very unfriendly system. Some of us are completely alone, we have no family, no spouse. Please keep sharing your experiences with us, they are quite helpful but please, be patient with us. We have no where else to go for help or advice or even a kind word.
I am not admonishing anyone on this site. I have been like everyone else very ill and have done the merry go round of medics. I believe a vasculitis centre offers better treatment for people like us. I am extremely lucky in the care I continue to receive and would encourage anyone to seek out someone who can look after us as we all deserve to be. I also understand that this isn’t available to everyone. We share our experiences on here in the hope that it may help someone else no more than that.
The most important course of action is to go to a centre of excellence or a department which understands vasculitis. That is a must because most of the medical profession have not got a clue. In part, this is not their fault because it is difficult to diagnose, everyone presents slightly differently and it is comparatively rare. There ARE people out there who specialise in vasculitis. I am sure vasculitis UK would help with names of consultants closest to you. You are lost if you do not get someone who has the necessary expertise. If your rheumatologist is on the list then tackle him/her. He should be organising a multi disciplinary approach to care ie he should be conferring with (and referring ) everyone else whom you need to see. I really feel sorry for you. The inadequacies are causing you to feel terrible. Fear not. Something can be done but only with a bit of proactive action on your part. Don’t worry about being nice!!!!
Hi, I'm sorry to say it is no different in the US. The specialist believe they are gods and we are puny minions. Getting an appointment is difficult to impossible. Forget timely, that isn't a consideration. Whatever you do, DO NOT ASK A QUESTION! The specialist will simply walk out of the room. I found out the hard way! I asked a question, the doctor got up and walked out and did not return (I asked if breathing issues were a symptom of ANCA-vasculitis/systemic scleroderma.) I sat in the exam room waiting for his return. After a while an assistant came in and told me to leave and handed me a sheet of tests to take. The doctor never returned. The specialist's office sends you to the GP and the GP says, "You have to talk to the specialist". That is a quote I have heard a zillion times. The GP will NOT discuss ANY issue if it can even be CONSIDERED an ANCA-vasculitis issue. Then the GP and the specialist send me off to others such as dermatology, ENT, etc., for ANCA-vasculitis issues. No doctor talk to the other nor will they read the others' reports. I'm not sure what the name of the class was that these doctors took in med school but it seems they ALL took the class and passed with A+. Hippocratic Oath? What is that?But, on the lighter side, we do have each other! Hang in there!
I have GPA and have had similar experiences, GPs and ANPs in primary care often say ask the specialist and then the hospital specialist or specialist nurse says the GP should be able to sort it so you can get stuck between the two (especially if it’s something that could be vasculitis related e.g. nerve pain and fatigue). Sometimes I feel like it would be nice to have a flowchart to know who I am meant to call!
It’s most challenging if you have symptoms that could be ANCA vasculitis related, if it’s something “obvious” (and clearly not vasculitis related) it’s usually easier and less of an issue as the GP or ANP knows what to do.
I’ve found it can help to be more specific with the GP e.g. I know my fatigue could be caused by my vasculitis but could you please rule out the main other possible causes? (E.g. thyroid, anaemia, vitamin deficiency etc. that they would routinely test for if you did not have vasculitis). If they say no, ask them to explain why and how they have come to the conclusion that it is definitely vasculitis related (without running through differential diagnosis), so you can raise it with rheumatology / your vasculitis specialist. If you can (I know it’s challenging), seeing the same GP or a GP who has an interest in chronic illness can also help. You do have to advocate for yourself sometimes which can be draining but is worth it to get the issues addressed. If you need support to do this, take a partner or a friend with you to appointments.
If you’re seen at a vasculitis centre hospital, the hospital doctors are supposed to work together as one MDT. It can really help to get all your hospital specialists under one hospital trust / one system so they can see each other’s test results and notes and you don’t have to go round collecting blood results and scans etc. They can also talk to each other if they need to and you shouldn’t have to play “piggy in the middle” as much. E.g. I have GPA and IBD and my GI and rheumatologist both want to start azathioprine but have different opinions on dose. As they work for the same trust, they can hash it out between themselves more easily, and I don’t need to get involved until I’m needed.
For nerve pain, a referral to a pain clinic is probably your best bet but the GP should be able to offer you some pain relief in the mean time.
Don’t suffer in silence and don’t feel bad about seeking care! With complex conditions like ANCA vasculitis you are actually saving the NHS money in the long term, by nipping issues in the bud before they become more complex, more expensive to treat and have a greater impact on your quality of life.
One final tip:It might also be worth asking your GP surgery if you can sign up for the “Expert Patients Programme (EPP)”. It’s a national scheme of six week courses for people with long term conditions that help you learn how to advocate for yourself more, better navigate the health system and meet other people in similar situations. Here’s some more information about Harrow’s version (each CCG should have their own version that you should be able to find if you Google expert patients programme and your area): harrow.gov.uk/health-leisur...
It can be really difficult to get the multi-discipline support we need. I am one of the lucky ones I think...my wife was on the case as soon as I got sick..local hospital thought I had lung cancer..that was a joyous few days until a PET scan at Marsden ruled that out. The radiologist at Marsden even wrote to my local hospital suggesting that I had EGPA but the hospital obviously knew better. We did our research as I got sicker went to our excellent GP with a name and contact details and he immediately referred us. We have learned that it pays to go to your GP with a name and contact details to get referred. They also need a reason to make the referral, but the nhs rules allow everyone to ask for a second opinion. I also now suck up a long and tiring round trip but its worth it.
I got a name from Vasculitis uk, I asked my GP to make a referral, she did, when I arrived at the appointment this Professor,yes Professor!! Actually said to me why have you come to see me today? She actually said it twice! I said my GP blah blah, she told me the GP had sent her no information whatsoever, no history, nothing. I was so embarrassed, mortified and then sick to the stomach. This lady heads up a Vasculitis centre and carried out tons of research. The same GP referred me to my local for chest pain, she failed to tell the consultant she had results from a very recent echo that I had scar tissue on the wall of my heart and that my bottom left chamber isn’t contracting properly. I wondered why he wasn’t taking me seriously, this only came to light after I had an angiogram and wrote a massive complaint reference the consultant at the hospital. My local NHS treatment has been nothing short of appalling, it’s the reason I had a heart attack !!!😡
Took me ages to suss out too. I haven’t got it right, but it is better. I worked out that my GP is more help for common problems like acid reflux, high blood pressure, gall bladder, respiratory infections and so on. The hospital team focus on keeping my GPA under control. But it is a nightmare trying to get them to talk to each other so I end up asking the same questions to both in the hope that someone will answer. With my GP I book a non-urgent appointment every 4 weeks or so for “review” with the same doctor. That has really helped. I never need more than 10 mins but he has sorted out many of my meds. Often he also tells me when he can’t help & I try and go back to the hospital. Hope you can get better support, especially from the hospital.
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