Off-loaded by my consultant, or, perhaps not.

[shanat19]

I was diagnosed with GPA [Wegener's] back in April 2002. Diagnosis came after I was hospitalised due to an intra-cranial haemorrhage as a result of the vasculitis, and after many weeks of GP appointments trying to discover what was wrong with me and who were treating me for sinusitis. Although being treated aggressively, the disease flared again after a few months and I eventually had a plasma exchange which seemed to get on top of the condition. I was anca negative by October 2002, and have remained so ever since. Over the months and years which followed, medication was gradually reduced to the level of a maintenance dose, and eventually stopped except for cholesterol and blood-pressure tablets and pain-management due to nerve damage, along with regular monitoring by a consultant and my GP.

I know that I have been incredibly lucky with this disease, especially when I read some of the stories on this site. My consultant has now decided that he, and the hospital, will no longer be part of any monitoring of my condition because he feels that there is no chance of my disease becoming active again after so long being dormant. My GP will now be in sole charge. Now, my consultant may indeed have a valid point and perhaps it is time to pull the hospital plug. My concern is that, given the dire fiscal condition of the NHS due to deliberate under-funding by this truly dreadful government, this is not so much a medical decision as a financial one, and that consultants in all departments may be under pressure to off-load as many patients as they can onto another budget. Like most hospitals today, my local hospital, Derriford, has financial problems.

As an ex-postman, I am hardly in a position to question this decision either on medical or financial grounds - I am intellectually out-gunned. It was nice, however, to think that my condition was also being monitored by the local hospital, who were, after all, the ones who made the original diagnosis.

[Hidden]

Hi,

These are the guidelines for the treatment of ANCA associated Vasculitis. If you scroll to page 12 it talks about long term monitoring. Much depends on the type of disease you had and how long you were ANCA positive for. It certainly recommends a pathway for rapid referral if you have any return of symptoms after being discharged from hospital care.

It's worthwhile noting that most patients relapse with the symptoms that they originally presented with.

[Hidden in reply to Hidden]

Oops!

rheumatology.oxfordjournals...

[shanat19 in reply to Hidden]

Thank you for that. Very interesting.

[Nadine99]

Can you not just ensure that you will be seen quickly if your symptoms re-present themselves?

[shanat19]

I know what you all say is true, and you are absolutely right. If symptoms re-present, I am sure that, given my medical history, I would be seen quickly. But I still suffer, and have suffered since my initial diagnosis in 2002, what I will refer to as nasal detritus problems. When the disease flared again in 2002, I suffered what my consultant referred to as 'significant kidney damage', which seemed to me to occur very quickly. My kidney function recovered to a certain extent, but I still have stage 3a chronic kidney disease [nowhere near as bad as most on this site, I know], and, given how long it would take to be referred back to the hospital since I would initially have to go through my GP [and how long does it take to get an appointment with an overburdened GP?], who can say what extra damage may occur by the time I am seen in the Renal Unit [the consultant who oversaw my case is a renal specialist].

I suppose, at the end of the day, I am just reluctant to let go of my safety blanket.