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Devastated & don't know where to turn!

Hi all

I’ve just been told by the hospital appointments that I won’t be seen by the neurologist until JULY!!!

As you know from previous posts I’ve just been waiting & waiting & waiting! I’ve been off work now for 7 weeks and there is no way I can go back in this state!

I was referred as ‘urgent’ in November - then 6 weeks ago my GP was told I would be seen within 12 weeks of receipt of referral (Jan 4th according to neuro secretary) - which has been & gone last week!!

Now they say July!! They are saying they have not had any letters from my GP!!!

I’m just devastated!

I feel like I’m having a breakdown here!! I can’t stop crying and just don’t know where to turn! I can’t get hold of a GP until tomorrow xxxxjenxxxx

How frustrating!!!

Whatever you do, do NOT accept it. Well, do accept the appointment (just in case), but fight for an earlier one. Get your GP to fax the neuro and ask for confirmation that it has been received as well as an urgent response. Phone the appointment line and ask for any cancellation that might come up too. Do the same with the secretary - be nice, be scared (let it out!), ask for help. You never know!

If nothing happens SOON, then get in touch with PALS - an urgent referral from November that gets seen in July? NONSENSE!

(((((hugs)))))

Hang in there!

Karen x

Jen (big hugs)xxx

I feel so frustrated for you. Please don’t wait to see your GP.

  1. Get a copy of your original GP referal with the date. The GP secretary can do this. Tell them that the hospital keeps saying they haven’t recieved it and you want to hand deliver if this is feasible.

2.I would visit PALS at the hospital (take the orginal referral with you if you have managed to get hold of it) if it’s feasible for you, if not the end of the phone. Explain the situation and whats happened. They usually are pretty good. They should be able to chase up and see whats happened.

  1. If you have no luck here contact your local MP. Express succinctly the issues and diffciulties in getting referred to the hospital (with dates). The neurology standards have been criticised quite recently and there are meant to be some NICE guidelines being developed. Because this is an issue thats quite current your member of parliament I’m sure will want to look like he’s doing something about it (read up on the MS society website about it).

4.Lastly Jen you as a patient have a choice. You are allowed to choose to some extent what hospital you want to go to (called choose and book). You may find that telling the GP you’re willing to travel (within reason) to get seen may open up a few more appointments for you.

Please don’t wait Jen. Kick up a fuss do something about it - this really isn’t right.

Sending you lots of hugs

Reemz

X

Oh Karen I’m just SCREAMING here!

I’m just so desperate now!!! I’ve just been hanging on & hanging on!! If they had told me in the first place I wouldn’t be seen until JULY I’d have taken the private appointment and been seen end of February!! But money is so tight and I thought with the GP & the other consultants pushing as urgent that I would be seen within the 12 weeks!!

If I count from my appointment with the neurosurgeon in November it’s already been 23 weeks waiting - if I count from the day they received the "urgent’ referral (4 weeks to come from across the corridor mind!!!) it’s already been 13 weeks

If I have to wait until July it’ll be 26 weeks!!! Just for the initial consultation - then would come the referrals for the tests and then waiting for the results!!

I know lots & lots of people are waiting and waiting and waiting & I’m ashamed that I’m so upset!!!

But I’m desperate - I’m just getting worse - the GP won’t treat me until I’ve seen the neurologist - they won’t let me go back to work until I’ve seen a neurologist - will they now be willing to sign me back to work!!!

But there - without help or treatment I literally am in no fit state to go back to work!!!

I just feel like I can’t take anymore of this - I’ll be in a psychiatric hospital instead if this carries on!! xxx

So sorry for ranting!!! xxxx

Hi, fingers crossed that your GP can do something about this.

luv Pollx

Hi Jen

These guidelines are to be updated as I mentioned but even if you look at the last guidelines which are still in use at present the timescales (even with some leway is more than what you’ve waited)

http://publications.nice.org.uk/multiple-sclerosis-cg8/key-priorities-for-implementation#rapid-diagnosis

Whatever you decide to do hope you manage to find some answers

Reemz

X

Hi Reemz x

The referral in November to the Neurologist wasn’t from my GP it was from the Neuro/Ortho Spinal Surgeon who works in the same hospital corridor!!!

The 2 missing letters are from my GP with updates, copies of scan reports, other consulatant letters & asking for an urgent appointment.

I was going to complain - then 30 minutes ago I got an email from the neuro’s secretary saying he had just received faxed over copies and has asked for an appointment to be made with him the last week of April (he also apologises for not being able to see me sooner but he is going away on leave starting today!!!).

I’d only just booked a private consultation with the same neuro for the 23rd April!!!

I have calmed down a bit now! I can’t believe how utterly distraught I was earlier! It was likea time bomb going off!!

Thanks once again guys!!! You are like a Rapid Respnse Support Team!!! xxxxx

xx Jenxx

Fantastic - result! :slight_smile:

Please don’t feel bad for being utterly distraught - I would have felt exactly the same.

So pleased you got your earlier appointment

Reemz

YAY!!!

Thank heavens for that!

Bloody ridiculous that this should have happened in the first place. I would have been apoplectic and seriously considering squatting in the hospital if I’d been you!

Karen x

Hey Jen I’m so glad your going to be seen at last. I know how frantic the waiting makes you feel but it’s going to be very soon now. I hope you stay calm until your appointment. You are so nearly there! Take care, Teresa xx

you’re not your

Glad you got a quicker appointment Jen, it’s bloody tough in limbo and we know how your feeling. Let us know how you get on and make sure you write down and talk through your diary. Chis

Hi, I have pm`d you and asked rizzo if she would too.

luv Pollx

Hi hun…its ok to be at the end of your theter…we all understand ehre…but yes yor Mp shold hear about this…like now but am so pleased that you have a date in april with the neuro…but its still worth asking for a cancellation if one comes up sooner…nothing to loose by asking…or at least letting them know you are prepared to come down earlier if there is a slot.

We all share your frustration…and your waiting so long is just not good enough…((hugs))

em x