trying to sort appointment

finally been referred to neurologist, and tried to make an appointment on choose and book but it wouldnt work, so dont know whether im getting an appointment or when! Dont know who to get in touch with to find out about this.

ive been signed off work last month and this month, due to dibhilitating fatigue (im diagnosed ME/ CFS) which is worse than ever. Ive now started falling, im not dizzy exactly when it happens, its just my body doesnt seem to be doing as its told. It took me 30 mins to walk a 10 minute walk on Monday, I felt like I had been heavily sedated yet Im only taking painkillers Ive been taking for a year.

anyway, just thought Id get it off my chest, hope you are ok xx

If you sign into the choose and book system online it should tell you whether you have an appointment or not. If you still aren’t sure, I’d phone the main number of the hospital, the switchboard operator will probably know who to put you through to. Is there not a phone number on the letter though? Not everyone has access to a computer yet. Good luck with it Faith

Hi all,

Now you both got me worried.

Ive been waiting 7 months for my first Neuro appointment. Im sure all I’ve had is a notification that I am on the list, and that was a month after the start of the referal. I’m hoping I haven’t got it wrong, that I should have booked myself.

All my specialist appointments with Gastro, Chronic pain etc have been booked for me. I usually just wait for them to give me a date. My GP said yesterday that he was disappointed it was taking so long , as I have deteriorated so much in these 7 months.

I will phone and tomorrow.

Either that or just go private. Is anyone else having to wait so long?

Anyway, thanks for prompting me to look into it.

Almond xxx

my local hospital averaged between 41 and 56 days wait, and we do have a national neuro service here in Liverpool too, so 7 months really doesnt sound right. I would ring PALs at the hospital you are being sent to, you are not supposed to wait longer than 18 weeks.

Thanks Deadchick07. Now I know my Doctor was concerned.

I will get back to you about my delayed appointment, if I get anywhere. Im in Wales, but I assume the waits no difference to England?

Apparently the waiting list is much worst in Wales, as there are very few Neurologists. Main thing is I’m still on the list, and they haven’t forgotten about me or lost my file. Though, if I dont hear something within a month I might go private. Would be nice to know how far down on the waiting list I am.

Anyway, thanks for the help Deadchick, hope you will be feeling better soon.

Take care

Almond xxx

Almond Owl

Just a thought… have you thought about asking to go on a cancellation list or could you go to an English hospital if the wait list was shorter ( & then transfer back)?

I’ve read posts on here where people have gone privately & then transferred over to NHS so you could do the same perhaps but it still seems wrong to even have to consider paying.

Sorry you’re having such a long wait.

Love & hugs,

C xx

Sorry… & Deadchick ( not ignoring you!!), my GP booked me on Choose & Book so if you’re worried maybe your GP surgery could help you?

My GP rang me as he did it to agree a suitable time ( I joked it was like booking a holiday/internet shop!)He then did it & printed out the paperwork for me to collect. He’s been a real star- even booking a phone call to discuss the appt afterwards when he has the blood test results/neuro letter. Reading what some other people experience makes me feel very lucky.

I hope everyone gets support & answers soon.

Cxx

Hi Cygnet,

Thanks for that advice ,I will definitely give the cancellation list a try. I’d never thought of that.

As for going private just for the first appointment, that’s what I meant sorry. I’ve had various operations when I was I teaching and couldn’t wait around too long, so I made a head start with private first. It was worth it, even though I felt bad for jumping the queue.

I will post the news when I finally get to the appointment.

Cheers for that xxx

I got my letter to ring up and book my appointment today, so I rang. The secretary went off to get my referral, then said my appointnment was for next week! Also, Im being seen at the neuro hospital, rather than the general hospital I had asked for. No idea what was written on the referral to get such a quick appointment :-/

Thats great news. What ever the reason, I’d make the most of it. Hope it goes really well for you. Let us know how it goes.

Good luck xxx

I agree with Almond Owl - this is positive news! Much better to be seen at a specialist unit/hopsital ( or even hospital!!)

Fingers crossed you get some answers soon!

C xx