Meetings

Nicchick

I requested a meeting with the Chief Exec of the hospital that has been treating me and it's been cancelled twice - both at very short notice (two/three days!) and it's getting really silly now!

I only requested the face to face meeting as I received a very threatening letter - the underlying tone referred to my getting the biological treatment I need. I want to ask the man in charge why I saw three different people (only one was actually my consultant) over three years when I was in a state of constant pain and inflammation. I also want to ask him why the diagnosis of PsA was assumed and why I was not actually tested for RA AND I want to know why my 'consultant' made a decision about my treatment without seeing me, referring to x-rays that were taken almost 3 years earlier and totally ignoring the rheumatology nurse's recommendations and assessments!

Grrr! Cross and also getting fed up of trying to reassure my lovely parents that they wont withdraw the Humira which gives me 4-5 good days each fortnight!

Nx

dreamdaisy

The very best of luck for when you do, eventually, get face-to-face with the head honcho. I know the hospital to which you refer (obviously!) and yes, I too had my struggles too with that department in my eearly days but it's all running smoothly now. I was termed an 'inflammatory arthritic' but my diagnosis of PsA didn't change a thing meds-wise: labels help but they're not the be-all-and-end-all in our auto-immune world. I'll be thinking of you on the day whenever it is, OK? DD

Nicchick

Thanks DD!

It's more to do with the lack of continuity of care and leaving things too long without reviewing the medications prescribed than the actual diagnosis. The lack of communication between departments could be sharpened up a bit and that would improve things massively!

I'll see what answers he can produce for me when the day finally comes...

Nic x

dreamdaisy

In my experience meds are only reviewed when they start failing to help, which kinda makes sense. As for departments talking to each other that has always been a failing and always will because I think the effectiveness of the NHS rests on one thing and one thing only: the ability of the back-room bods to do their jobs. It's not a glamorous role, they must be inundated with paperwork, referrals, notes, letters etc and it's no wonder that they system gets swamped from time to time. I doubt anyone ever says 'thank you' to them when things go right but they're always in the firing lline when things go wrong. Anyhoo, let us know when the great day finally dawns, OK? DD