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Referrals - Professor Peter Goadsby & Dr Juana Marin

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#1 Wed, 11/03/2015 - 19:34
Mr Git
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Referrals - Professor Peter Goadsby & Dr Juana Marin

Hi all

I recently suggested to several sufferers that they try to get a referral by their GP for Prof and Juana under the choose and book scheme. Prof and Juana have not been at Kings College Hospital in south London for very long and it takes time to get all the admin infrastructure into place.

Unfortunately, the system would not allow the GP's to refer to Prof at Kings. Therefore, until this issue is resolved, if you would like to have a referral with Professor Goadsby (the Patron of OUCH), if you send me a PM I will put you in contact with Juana.

This will involve your GP having to send an emailed referral. I remember when I did this at my GP surgery the medical secretary said to me "this isn't normal", to which I replied "neither is suffering pain like someone is power drilling into the side of your head, it's only an email and it is the 21st century!".

Medical secretaries.....don't get me started!

Anyway, there is an option there if you need it.

KBO

Sean

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Tue, 17/03/2015 - 23:35
JeremyJ
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Hi Sean,

Tell me about it...

Juana has been mentioning appointment issues to me in e-mails for most of the past year since they moved. She asked me to get me my GP to refer me in December (I've been a patient of the Prof on & off for 14 years) - I got a letter in January saying that I needed to send another letter because I lived in Scotland and the process was different!! I rang the secretary and told her the only thng she was getting from me was a map... Staffordshire may be North of London but Scotland it aint.

No disrespect to Scotland intended since I quite like it there, but since she

a) blamed someone else for her mistake ("someone else told me where it was", so broke my rule no. 1 of holding your hand up when you mess up, and 

b) also got my birthdate wrong on the letter,

I thought she did a rubbish job.

Still, all sorted, got a letter confirming an appointment next month.

Cheers

Jeremy

Thu, 19/03/2015 - 20:19
Mr Git
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Hi Jeremy

Apologies for not getting back to you sooner but I have been working away this week.

I presume it was your GP secretary who messed up? Which part of Staffordshire do you live in? I'm probably not too far away from you. Sounds like you are in the part of Staffordshire which specialises in deep fried mars bars and iron bru!

Have you any idea how much trouble I will be in from Elma for saying that  :O ......ooooops! Sorry Elma!

Medical secretaries can be at best, a conundrum, at worst a down right pain in the :jawdrop:....we have to be determined, resourceful, positive and constructive. They can sometimes epitomize the antonym.....oh well!

If you have known Prof and Juana that long then you will know they deserve some sort of recognition for the work they do. I have witnessed it first hand at the coalface. The hours Juana puts in are ridiculous. I would estimate Juana works 20 hours a day 7 days a week and never has a break, all to help CH sufferers. She doesn't need to be doing this, she could be earning 10 times more in the commercial world working 25% of the hours. Juana and Prof are true heroes and we should never forget this. Unfortunately, the NHS doesn't seem to recognize or back up their heroism, instead putting endless minor admin hurdles in their way, it's so frustrating.

I hope you get sorted in April Jeremy, please be sure to give Juana and Prof my best wishes.

Sean

 

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Fri, 20/03/2015 - 09:15
JeremyJ
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Sean,

No it certainly wasn't the secretaries here! It was the secretary at Kings....The secretaries here are great. Certainly by comparision. Juana had been telling me there were problems, when I mentioned this to her, she think it was particularly re-assuring!

I'm in Cannock. Moved here 3 years ago. I'm Yorkshire born but lived and worked in Coventry for 30 years (including 6 in the NHS for my sins) before having to stop...

Agree about Juana. Over the past couple of years I've received e-mails with some very odd timestamps, 1 & 2am... I asked her once if she'd had a good Christmas and she said she hadn't had a break...

Regards

Jeremy

Fri, 20/03/2015 - 13:34 (Reply to #4)
ElmaA
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Joined: 26/02/2014 - 14:55

Hi,

tut tut ,  Mr g ,

afraid it's the naughty step for you........

keep smiling and hopefully p/f..

ELMA.

Sat, 18/04/2015 - 23:28
Brian C
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Joined: 26/02/2014 - 14:35

I HAVE BEEN WAITING A YEAR,

FOR THE ALL POWERFUL PROF TO GET BACK TO ME MY FUNDING IS IN PLACE BUT ALL I HAVE HAD BACK FROM HIM IS A 1 LINE OF TEXT SAYING IT TAKES TIME

UNFORTUNATLY MY TIME IS UP.

 

 

 

Sat, 18/04/2015 - 23:31
Brian C
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MR GIT MUST BE A SPY IN THE CAMP OR IT SHOULD BE MR S.......

Sat, 18/04/2015 - 23:58
Harrietjt
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Joined: 22/10/2014 - 12:47

Just seen your four posts from these evening and want to say how sorry we both are that you are having such a bloody terrible time.

Harriet and Peter

Sun, 19/04/2015 - 02:01
Brian C
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THANK YOU

SORRY I SOUNDED OF SO BADLY

 

Sun, 19/04/2015 - 09:05
Mr Git
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Brian

Like many others on this forum I give up my time to try and help other sufferers, focusing on trying to speed up their learning curve as knowledge and experience are the greatest weapons in the fight against CH.

During the last two months I have managed to put four sufferers in touch with Prof and Juana, and judging by their subsequent messages to me it seems they benefitted from the experience.

I'm sorry that you are going through a rough time, please feel free to say whatever you like about me but you won't win many friends by disrespecting Prof on this forum.

I hope you get an appointment and some relief as soon as possible.

Sean

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Tue, 04/08/2015 - 18:59
simonA 2
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Joined: 26/02/2014 - 15:14

Hi, I was a patient of Juana back in the early part of last year, when I last saw Juana I parted with waiting with a appt when she moved over to the prof...... Now gone to another neuro, still having the difficulties now as then. !!.

been on topramate for a long time side effects worrying !!.

simon

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