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Sunday, 7 November 2010

N.H.S.and the unsupported Carer...

Hi Guys, I think it really is hard hat and flak jacket time here.

Things have taken a tumble and the N.H.S. is to blame for all the stress I'm under at the minute!

A quick re-cap of the story so far...

Coo's Neuro is a real nice guy...usually!
We've never had any problems and felt sure we could trust him in giving Coo the best care possible and we've never had anything shake this belief and trust...until now that is!
In August, the neuro wanted to have Coo try out a new drug and we agreed as at this point, still with 10 - 15 seizures every day, we thought, almost anything was worth a try.
Anyways, we agreed but our GP and he's a good, caring and trusted, family doctor, did not want to prescribe the new drug as it needed to be closely monitored.
So...we've been waiting around for almost four months trying to sort out who would be responsible and who would prescribe this drug that may or may not help Coo!

Now hold onto your hat for this one...It's been decided...nobody will prescribe!
We've had a very curt 3 line letter saying as the GP won't prescribe this drug the neuro will no longer see Coo and he's been discharged from the Epilepsy clinic!
Now correct me if I'm wrong but isn't the health service there to support people with severe disablilties and their Carers? people just like Coo and I who are struggling daily to cope with major disabilty and health problems?
Well, I thought so too but it looks like, when you scratch the surface, things are not so cut and dried.

I'm hopping mad and fit to be tied!

I immediately contacted the neuro's secretary, who has only ever been a very nice, helpful person before, to raised my concerns.
I told her, I do not agree, Coo is well enough to be discharged from the care of a neurologist given the problems and difficulties living and coping with such a high level of seizures. I mean, it's only a few weeks ago the out of hours medical services here, contacted us to say Coo's latest blood test had registered overdose levels, was toxic and needed to be reduced immediately.
Now, does that sound stable to you? Me neither!

I only hope the Neuro decides bearing in mind, both Coo's health and my objections, to reverse his decision and continue to at least try and help Coo.

Neither of us ever want to be in the position we found ourselves three years ago. Coo hit a major crisis point, with thirty seizures a day, was not under the care of a Neuro and it took almost six months to access the system and get some help.

It's a time neither of us will ever forget and probably the darkest time we've ever had. We felt so powerless and bereft and hell will freeze over before we find ourselves left in so un-supported a postion again!

I've dug out my hard hat but I really hope this resolves before things turn ugly!

I hope you're experiencing a more settled time where you are!
(((hugs)))
maz x

3 comments:

Tim Worth said...

This is disgusting! I hope the Neuro boffin rethinks his choices and allows Coo to be seen again. Try contacting your local NHS trust HQ too.

Sapphyre said...

Would be nice to have a discussion about it, before receiving the curt letter!

maz said...

yes - now wouldn't that have been nice!
Hope things are ok with you!
(((hugs)))
maz x