4 years ago
Protocol…

Ok, i’m writing this post separate to my other one as bumping it seems unnecessary.

So they wanna test me for devics (NMO) I get that but what I don’t get is if it’s worse than ms then why didn’t they check for this earlier and as if to make matters worse I’m told that I don’t get the test by appointment but by going into hospital outpatients basically anytime and sitting and waiting (for what could be hours) to get the test.

Very annoyed at the moment and not feeling like going and waiting in out patients for hours, they can darn well test for it next time they call me in if it’s so unimportant to them.

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@f3ng5hu1, you’re understandably frustrated at the unwelcome turn of events.
The question has been asked, so you need an answer so that you can then reconsider your options.
The fact that the possibility of Devics seems to have been overlooked would appear to be an unforgiveable oversight on their part. They should be moving heaven and earth to either confirm or discount this new diagnosis.
I’d be inclined to get very politely assertive with them and demand that they arrange for a test at your convenience, as you feel there may be grounds to question the misdiagnosis.
Hope this helps.

I’m not surprised you’re angry. I think it also begs the question: is this neuro team competent? Can you voice your dissatisfaction to the MS nurse?

Thanks for the replys.

Stumbler, I’m thinking along the same lines.

Cameron, yup I will speak to the nurse about this also, see what she has to say.

Protocol.. One of those words that allows commonsense to be binned.. in my book its blasphemy.. I spit on it!
I’ve had the ‘go to outpatients and wait thing as well’ its a simple admin/moneysaving thing for them. Nothing more..

They would have saved time if they had tested for this initially.
A simple test like that with symptoms so similar to ms should have been done at the outset, especially as it could be ultimately a worse condition.

Oh well, can’t complain too much it being the NHS I suppose.

@f3ng5hu1, the NHS have failed in their duty of care to you.
The least they can now do is expedite their investigations to confirm your condition to show that they do care.
Don’t allow the NHS to set the agenda when they’re at fault.

No, @f3ng5hu1, complain is what you MUST do. In the internal market of the NHS, you are the client. You have rights and entitlements. One of these is to a second opinion. If you get no joy when you take it up with them, I would seriously consider transferring to another neuro team. Or at the very least, going through your hospital’s PALS (official complaints)channels and telling them that their attitudes and actions have given you unnecessary stress – the very worst thing for your compromised immune system. We all deserve better.

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