Does you GP have a good understanding of you... - Vasculitis UK
Does you GP have a good understanding of your condition?
I saw mine yestertday because I want to have hypontherapy, I have cerabral vasculitis the hypnotherapist asked me to get clearance from the Gp to have it.
Gp response, I dont know anything about your condition. I dont think it will do you any harm.
I find that I hit a brick wall with the Gp's. They just dont know about my condition.
How do you get on with yours?
My GP is really good, but he wasn't the GP when I was diagnosed in 1997. When I introduced myself to him as a new patient in 2004 I said I hoped he wouldn't have to see me again, and just needed to keep an eye on blood tests and repeat prescriptions. One month later I'm back in his room saying "I think the inflammation in my brain has gone badly out of control again" to which he replied that I'd be the one to know, then arranged necessary tests, and liaised with the consultant. I don't expect him to know much about my condition - any vasculitis is rare, but cerebral vasculitis as I have is particularly rare, and my type a slightly unusual variety - but he trusts me to monitor things, and works with the consultant. I can't really expect any more than that. Though I do get a little frustrated at times that I think he struggles with the invisible nature of my disease. But otherwise he's really good, and listens, and I think I was very lucky to get him as my new GP just before my huge relapse. He's the best GP I've had since being diagnosed. In the patient-GP relationship with vasculitis I think you have to be the expert on your condition, and the GP has to accept that. That's what I've found best.
It is a very interesting question....John is the only person at his local practice with Vasculitis. His first symptoms were coughing up blood and his GP sent him for Xrays but John's health very quickly deteriorated. The hospital then dealt with everything...they were excellent and to cut a very long and quite traumatic story short, after a few weeks John was diagnosed with WG. John experienced a couple of relapses after then and all the GP's at the practice were great. I do not think they had a good understanding of John's condition but always listened to John or myself especially in an emergency. When John had a big problem with his leg in 2007 his GP soon diagnosed a DVT and he thought it might be due to the WG and immediately referred John back to the hospital for treatment. This GP has since retired and the new GP is very clued up on John's condition mainly because John has talked to him in depth about Vasculitis and this GP has been a good listener. I think John's medical back ground as Dental Surgeon for over 40 years may have had an influence on the GP's actually listening and taking notice of John. There was just one strange coincidence, just before John was taken ill with WG, he had been treating a patient who had just been diagnosed with WG who was experiencing big health problems and also had the saddle nose and his nose had totally collapsed. So John was quite aware of WG and what the health implications were, he also remembered that WG had been discussed briefly as part of his BDS degree.
Thank you for the responses.
It is great that your GP's take the time to talk and listen to you.
Once I went to one in the practise with alot of things I needed answered. The GP told me I should have made a double appointment, I have never seen him since.
I find that when I see my consultant even that is rushed.
I must be more assertive and tell them all what I want and try to get them to understand that, even if they dont know much about my condition I know my body and when someting is going wrong with it.
My GP knows nothing really about my condition, I am the only patient with this condition at my surgery, I have to rely on my hospital visits to keep me in the loop and this site of course. I have to say though that my doctor is trying very hard to find out about the vasculitis condition and will always investigate meds before giving me a px for anything. Perhaps all doctors need a greater understanding of this illness that creeps up on you.
Patsy
I was very lucky when I was diagnosed in 2006 that both my GP and the ENT he referred me to both had experience of Wegners and were both instrumental in my diagnosis. My GP has now gone on to an NHS consortium. I have a very young Dr now which worried me at first but he always listens to me, and I think that he understands that I know my body best and that my rheumatologist will deal with the big stuff!
My GP has been brilliant in many respects. He has only ever seen 1 other case of WG and that was when he was training over 20 years ago.
Although he has been great at keeping in touch and helping me feel like I have control over my treatment he did mis-diagnose me at first with pneumonia (wasn't too long until they worked out that the shadows in my lungs was actually bleeding). My major problem all along has been the lack of communication between my GP and the 4 different consultants I have been under. I have found that really unhelpful and distressing at times.
My first GP had not idea at all and was months before he did any blood tests or a chest x-ray. Local Hospital consultants good and bad experiences but thankfully they did pick it up and once on the case a quick diagnosis was made as was going into renal failure. The GP's I have now are very good and tend to go on what I say Addenbrookes have advised me and sort things out if necessary withhout letters and see me at short notice. Last year when I had some eye problems they even looked up what sort of problems WG could cause.
I think there is a distinction to be made - at least in my case - between a GP's role in the initial diagnosis of any vasculitis, and their subsequent support in the long-term management of it.
My GP back in the mid 1990s diagnosed me with ME. That diagnosis turned out to be wrong, but I had to fight for new tests, and a new diagnosis, including arguing my case with a hospital consultant. It took me 3 years to be finally diagnosed with cerebral vasculitis. By then a lot of irreversible brain damage had been done, and my disease had become quite entrenched.
Now my (different) GP works with the consultant in managing my disease.
But I think diagnosis can be very difficult. Managing can be easier. But GPs need to be prepared to listen to their patients, and be open-minded.
Iam the only person at my surgery with W/G and they dont seem to no what to do as they have never had to deal with it before, i get very frustrated when i go i sometimes wont go cos i think iam wasting my time and there,s.
When i first presented with symptoms i was told that my shortage of breathe was due to me carrying a bit too much weight. i felt that was wrong as although i was overweight, things i could do before were such a struggle.
then i present with general tiredness and fatigue. i was told i was a hypocondriac. this was in Bristol. I then moved to the midlands where i was referred to an ENT consultant due to crusting. He sat and listened to me for what seemed like hours and asked me to book another appointment with him for 6 weeks time. I went back at the due time and spread all over his office were all my medical records from all the various doctors and consultants i had seen since i was a baby!
He had requested everythign on me, and found a common thread. He referred me to City Hospital in Birmingham to see Dave Carruthers and there i got my first real diganosis of Wegeners. I litterally was in for chemo with a month and back on the road to recovery.
I went to my GP not long after i finished chemo, and saw a locum. he pretty much stated that the term wegeners was given to people who couldnt be pigeon holed and were a drain on resources. I informed him that they dont just hand out chemo to anyone and that i was shocked at his attitude. When my GP returned, he blew a fuse and the locum has never been seen since! My GP was a ENT surgeon in a previous life so knew all about wegeners.
When i moved to wales, i had the good fortune to fall under a GP who also ran the local vasculitis group. He has three vasculitis patietns in his surgery alone.
I am going back onto chemo in january 2012 as i am symptomatic again, however, without this GP and his familiararity with WG i seriously ran the risk of being ignored again!
I think my Gp has an over view of my condition but no real knowledge, I 'save' my list of problems for my rheumatologist - I don't find any consultation satisfactory because I always feel rushed. I'd love to write my vasculitis tale but I really can't be bothered, I've had churg-strauss vasculitis since my daughter was 10 months old, she's 17 now
Due to my previous doctor retiring I have just been assigned to another doctor and she has been seeing all her new patients who have unusual illness's. Whilst she clearly did not know much about Wegeners, other than she had read on the internet, she did want to make certain I knew what was going on and knew waht all my meds where for.
Every time I have seen my consultant he checks that I have his secretary's telephone number, and reminds me to contact him rather than go through my GP if anything happens.
GP,s by definition cannot be expected to know about all rare diseases.
Although there is obviously some variation between the thousands of GPs, the vast majority will have no experience of Vasculitis, nor will they have heard of the different varieties.Very few Vasculitis diagnoses will originate from a GP,because the symptoms are so similar to many other diseases. This plus the fact that one's GP often changes is a frustrating situation for us sufferers of Vasculitis.
My experience of GPs is ( factual not critical ) that they have very little relevance to diagnosing or treating Vasculitis. They are there to prescribe repeat medication, levels of which are determined by one's specialist consultant, normally from the specialist areas of Rheumatology, Nephrology(kidney), ENT, etc.
Personally, I find it frustrating to have to educate my GP about Vasculitis,but it is probably worth doing as the more GP's that know about it, the better the chance of a faster diagnosis for others.. I am absolutely convinced that many of us would be in better shape today had we been diagnosed earlier and commenced treatment before some of the symptoms developed to a situation where they are irreversible.
The bottom line is that you are better developing a good close relationship with your specialist consultant. IT is important to see the same one each time and not to seea trainee or junior without the necessary experience. To achieve this may require you to be assertive.BUT it is your body and you should have a say in who you see.
Many thanks for all your answers.
varied and interesting to read.
Communtication is the most important thing when dealing with Gp's and Consultants.
No! Must admit I seem to be teaching my various GPs.
My Gp didn't have a clue, when we checked out my symptoms on the web and told him we thought it was WG ha told us not to be so stupid as that was extremely rare. For first 5 months they thought I had Tuberculosis.
I don't think GPs know much about my condition . I was diagnosed at 16. Originally , I had pluracy , which Made me ill in first place. I deteriorated from that and they didn't know what was wrong! I am going back 50 years, but in all the years I've had Takayasus , very few Drs I see know little or nothing about it. Even in hospitals. I lived in Scotland when I was diagnosed and They brought in a lot of Drs to see me. My case was in the B M J . They didn't have much knowledge back then. I think there has been some progress over the years, but not too much as it's very rare. Steroids was all I was given back then. I spent a year in hospital on and off, till they got dose right. But steroids cause so many other problems . I now have A S , severe Osteoporosis . Caused by Steroids. I did try Methotrexate and Infliximab , but they didn't help me. So I hope you people get some help from one of those. I believe there is another new drug out. I'm hoping to try that when I go to my next appt at my local hospital
As far as I am aware, my GP didn't have too much knowledge of Vasculitis. He referred me to hospital because my blood test revealed problems with my kidneys and my blood.
I am the only person with this disease at my practice but he knows much more now due to the information I have given him over the last 3 years (almost). He did say once that I probably know more than he does now 
I am very lucky in that he knew there was something not quite right and started the process tome getting the correct diagnosis and treatment.
Jacqui 
Its so hard to have a conversation with Gp's as, they dont know too much about CNSV. My consultant told me once; it is so rare, that he depends on information he pick up semimars (sp)
I have met another lady in Northern Ireland with the same diagnosis as me through vasculitis ireland as far as we are aware we are the only 2 with CNSV.
Does anyone have symptoms wait to show up until you get into bed?
Doctor says egpa does not affect your brain
Did anything good happen to you this week?
Does anyone have any advice on taking Rituximab?
