graham100 19/02/15
Last reply 3 years ago
Lost cause??

I think Iv become a lost cause. Last time I see the nurologist was oct 2014. Nxt appointment April 15, just got letter cancelling April rescheduled too november. 7 bloody months. (Hello) Why bother, nxt it will be,, if we saw you sooner we should have changed those meds you are on. Might as well just hibernate till November. lol (what chance have we got).

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stumbler
3 years ago

@graham100 , don’t hibernate until November, you’ll miss Summer!

We do have to be Masters of our own destiny, so if there is anything you want/need, bend the ear of your MS Nurse. They can then bend the ear of the Neuro, if need be.

Just don’t be fobbed off…….


tracyd
3 years ago

@graham100, as Stumbler says …. create, kick up a fuss they’re required to review your ‘condition’ every 6 months not at their convenience … Give em hell !!! xxx


graham100
3 years ago

I find it hard to talk to the MSnurse. But as I only see her last week, that probably counts as a consultation?? That’s life. lol


stumbler
3 years ago

@graham100 , you have to be stronger and more assertive than your MS Nurse. They’re there to assist us. Just research whether you fit the NICE guidelines ( https://www.nice.org.uk/guidance/cg186 ) for what you want.

And remember, these are only guidelines. Neuros can make their own decisions!

Use e-mail if you find it hard to talk to her!

Don’t let the tail wag the dog! 😉


graham100
3 years ago

Know what you mean stumbler but seriously this one says you are the weakest link. Goodbye.lol


stumbler
3 years ago

Then you need to screw her, @graham100 . Figuratively speaking, of course. 😉

If you feel that you’re not getting a reasonable level of service, then kick up a shit-storm!


Anonymous
3 years ago

Write a letter of complaint. Seriously @graham100 the only way you are going to facilitate change is by being proactive and assertive when in comes to matters about YOUR health and YOUR wellbeing.

Contact the hospital, state you are unhappy with the additional 7 months wait given with no explanation and ask if they will reconsider. If they are unable ask for a copy of the complaints procedure and get on it. Think of the relationship as a business one.


lin-holland
3 years ago

Where do u go to see yr neurologists Graham, when I was at Queens I saw Dr. xxxxx once in 10 years! Then I changed to Basildon, saw the main man every year, I’m now at Chelmsford an see him every year, but, your right there a waste of space really. My advice is give em a hard time, they will av to c u quicker if u complain enough.

PS Name removed to protect privacy – Stumbler.


graham100
3 years ago

Hi Lin. Basildon. Did we meet in debenhams? It seems like everyone has similar problems so will work with it. At the end of the day, even if I get to see her. She’s probably not going to do anything to help anyway. Thanks guys.


Anonymous
3 years ago

How would you know that when you haven’t even tried?


graham100
3 years ago

Hi sandwich. It’s just a feeling over the last 3 yrs not feeling that anything has actually made me feel any better. Only thing that makes me feel good is chocolate. Lol


lin-holland
3 years ago

Yes we met in debenhams Graham. I’ll go with chocolate as well, but, my waste line won’t lol

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