GPs not accepting consultants' diagnosis

[Jaxxi]

Recently I was diagnosed with Behçet's at the Birmingham CoE. I went to see my GP, who diagnosed me with CFS 14 years ago, for a chat about it, and was very surprised when he said ' I am prepared to accept a diagnosis of PROBABLE Behçet's'. Since then, I have read of several GPs not accepting a Behçet's diagnosis at all! What is going on here? What is the point of a GP referral system if the GP subsequently modifies or denies the specialists' diagnosis?

[billi]

Yes this does happen a lot and not only with GP's but also consultants. I had a situation where 3 out of 5 said without a shadow of a doubt it is BD, 1 said unsure and the fifth said he would settle for probable. Now this was over 20 years ago and I was hoping things had changed but obviously not. I think there are two ways to look at this...because so little is known about all BD and it's many manifestations and a lot of medical professionals have big egos it is not a clear cut case and secondly a very wise doctor told me...forget about the NAME ...you do have an autoimmune disease and you will get the treatment needed...and maybe one day we will all agree to agree. I know a lot of you you may disagree with this and maybe it's a bit of a cop out and things should have gotten better with diagnosis by now but hopefully this is what the Centres of Excellence will achieve. In the meantime we have this site and other sufferers and we know we all have the same disease, we just have to stick together.

Hugs

Billi

P

[billi]

Oops forgot to mention the Centre will write to your GP about diagnosis and meds etc. also that the. NHS itself is running out of funds and so it could all be about money and costs of meds and all else.

Billi

[andreafm]

Possibly a bit of sour grapes as well Billi and Jaxxi

I had a G.P once that was very put out that the original diagnosis I had of Chronic Fatigue Syndrome, was overturned after 15 years of suffering........needless to say I am happy not to be with this surgery anymore.

I have had some horrendous times in the Medical System in the past with misdiagnosis and claims of psychiatric causes, mistakes on records etc.

I think because Doctors live in such fear of complaints and compensation claims that they can re-act badly when they shouldn't.

It is a shame it is like this but I am sure Jaxxi's G.P will get on with it once the report from the clinic arrives.

Jaxxi......Perhaps you can contact the C.O.E Clinic and ask for a copy of their report for yourself.

[Jaxxi]

The Centre HAVE written to my GP, with a clear heading that says 'Diagnosis: Behçet's Disease' and stating further down that I fit the Behçet's criteria. I was sent a copy at the same time.

I don't have a great deal of personal concern as my own GP is quite supportive and as you said, is probably covering his back - he is still chuntering on about the CFS, whereas I can clearly see that the chronic fatigue is caused by the Behçets rather than being a separate comorbid illness, as the GP seems to be inferring.

What bothers me more is the confusion that such erosion of professional principles can cause. What is the point of having a health system that uses a system of specialist referrals if the primary care team do not fully and unequivocally concur with the specialist diagnosis? What if a person with a specialist diagnosis of Behçet's is rushed into hospital and the GP is contacted, but does not mention the Behçet's as he sees it as insignificant or not sufficiently proven?

[andreafm in reply to Jaxxi]

I must admit I get the issue of being rushed into hospital with confusion as to what condition they are dealing with. I have a list of more than 1 very rare conditions and this does cause an issue. What I have done is produce my own folder with all the latest or pertinent reports and we take this with us to hospital if I have to go in as a matter or urgency. The emergency doctors then contact the consultants or hospital that are dealing with me, for advice.

As a matter of interest I still have the diagnosis of Chronic Fatigue Syndrome on my list of diagnosis. My Consultant still adds this in when he writes his reports....I can't say I that much mind really as it describes the fatigue side of things to other Dr's I see.

[Jaxxi]

The folder is a good idea, Andrea. I got on my high horse a bit back there about 'erosion of professional principles' didn't I? It's just that Behçets is a confusing enough illness as it is without doctors muddling people around!

[andreafm in reply to Jaxxi]

I get exactly where you are coming from and this is one place you are able to get on your hi horse without it posing a problem as we here do understand what it's like

Like you I have been a long time in the system...and most of the time in the wrong place. I've tried everything to get my healthcare exactly right over the years and realise that the only person it is really affecting is me and my health.

I go to around 3-5 different hospitals and invariably, in an emergency they take me to my local hospital where some of my Medical Notes are on file and the rest isn't as it is at another hospital. Over the years I have worn myself out trying to make sure every hospital had a copy of each others reports on file. Only to later realise that most of time they refer to the computer records which only have the reports that hospital has written and not copies of the reports from other hospitals that I have given them to put on my medical file.

Now I hand my file over for them to read and it works out so much better for me because they won't disagree with what another Doctor has written and so I am not pre-judged or challenged over the diagnosis etc. The hospital also knows who to call to discuss it and for advise on treatment.

Hope it works as well for you