Gosh appt in june - problems please help

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Gosh appt in june - problems please help

Postby MandyG » Thu Mar 19, 2009 4:01 pm

ggggrrrrrr

you know what? I am sick of this

rebecca has a check up at sue's clinic on the 3rd june , sue told me in november (whilst on the 2 week rehab course) that she would organise an appointment with her podiatrist on the tuesday before (2nd june)

well I have sent 2 faxes and phoned about a million times and they still dont know what is going on

no appointment has been made, so I am told to bleep sue, no answer

to top it all off I had a phone call from the rheumys today to say I have too many people coming down in june (myself, my mum to help me and my 3 kids - 5, 3 (rebecca) and 1) so I have to leave some home

what? I phoned them again and explained I cant leave any kids with their dad cause he has suspected narcolepsy ( I have to arrange extra care for him whilst I am gone) so I obviously have to take the other 2 with me, I have EDS and mobility issues so I need my mum to help, plus we have no other people that can help

she had to phone the hotel and that gy is gonna have tophone his manager then they will phone rheumy who will then phone me back

she said she didn't think it would be a problem. Thats when I asked her about whether the podiatry appt had been made yet. and she had no idea then told me to bleep sue

would I be better sending sue a letter now? I am sick of phoning every day.

please help me.

we have already booked the tickets for going down on the 1st june - so we stay night at hotel for appt with podiatrist on the 2nd, stay another night for main appt with sue, then stay that night to avoid having to drag our bags to the appts. leave on the 4th. This is what happened in november.

I have also booked 2 private appts with prof G for myself and my 5 year old on the 2nd june in the afternoon so I need to know when the podiatry appt will be cause they cant overlap.

If the poidatry can only do afternoon what do I do??#?

help me

xxx
Mandy - DX EDS III by prof G June 2009
mum to Rachel 9-DX EDS III by prof G June 2009
Rebecca, 6, DX EDS III nov 2008, GDD, selective mutism, PDA
Charlotte 3- EDS III DX 2010
Louie 2- showing signs
Also carer to my husband who has narcolepsy + cataplexy
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Re: Gosh appt in june - problems please help

Postby muppet » Thu Mar 19, 2009 6:10 pm

Hi,

When we had problems in getting info and chasing appointments we phoned the pals office in the hospital. I explained what was going on and they were brilliant they chased up the info i needed and had it sorted in a day.

Just call the hospital switch board and ask for the pals office and hopefully they may help you.

Helen
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Re: Gosh appt in june - problems please help

Postby MandyG » Thu Mar 19, 2009 6:38 pm

thanks helen - what is pals? sorry never heard of it before

xxx
Mandy - DX EDS III by prof G June 2009
mum to Rachel 9-DX EDS III by prof G June 2009
Rebecca, 6, DX EDS III nov 2008, GDD, selective mutism, PDA
Charlotte 3- EDS III DX 2010
Louie 2- showing signs
Also carer to my husband who has narcolepsy + cataplexy
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MandyG
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Joined: Mon Sep 10, 2007 5:32 pm
Location: fife

Re: Gosh appt in june - problems please help

Postby muppet » Thu Mar 19, 2009 8:55 pm

Hi,
I can't remember what it stands for but it is a liaison service they are in most hospitals and help with everything from chasing notes to complaints.

In our case we needed some notes sent to our local hospital but nobody from the ward was getting back to me after a week of me hassling and a week of my G.P. phoning to, I went to pals and they tracked down the notes we needed and had them faxed to our doctor.

They also helped when we were booked on the 2 week course but had not been booked in the patient hotel, we were supposed to travel from Cambridge to London each day! :think: they sorted everything out for us.

I don't know if they will be able to help but it is worth a try every time i have had problems with communications they have helped.

Hope they can help you to

Helen
muppet
 

Re: Gosh appt in june - problems please help

Postby Eloise » Thu Mar 19, 2009 8:58 pm

PALS is patient advice and liason service. All hospitals and PCTs need to have one set up and they deal with all patient questions and concerns.

Did a quick google for GOSH and PALS and found the phone number 020 7829 7862 http://www.ich.ucl.ac.uk/gosh_families/ ... index.html

I really hope you get everything sorted.
Benign Joint Familial Hypermobility Syndrome (BJFHS) - Confirmed Prof Bird April 2008 :)
I am a Pharmacist and I will give my opinion on these boards. However, always ask your own health professionals for your individual circumstance.
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Re: Gosh appt in june - problems please help

Postby barkingmad » Fri Mar 20, 2009 1:30 am

Hi mandy,

i have heard back and apparently its been dealt with, so hopefully you will hear something tomorrow. :hug:
barkingmad (Donna)
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Re: Gosh appt in june - problems please help

Postby MandyG » Fri Mar 20, 2009 10:08 pm

hiya

thanks again so much for helping donna

I haven't heard anything except had a call from rheumy sec again wanting dates of birth of all of us coming down as hotel are still thinking 5 is too many.

mentioned nothing about podiatry appt.

just hope this all works itself out before we go.

xxx
Mandy - DX EDS III by prof G June 2009
mum to Rachel 9-DX EDS III by prof G June 2009
Rebecca, 6, DX EDS III nov 2008, GDD, selective mutism, PDA
Charlotte 3- EDS III DX 2010
Louie 2- showing signs
Also carer to my husband who has narcolepsy + cataplexy
User avatar
MandyG
enthusiast
 
Posts: 223
Joined: Mon Sep 10, 2007 5:32 pm
Location: fife


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