Private appointments

Please post here any query that relates to Great Ormond Street Hospital/or your child's/adolescents hospital appointments generally. Within this section is helpful info regarding tips & hints for hospital visits -stays.

Private appointments

Postby mami2four » Thu Jan 06, 2011 3:18 pm

We are still waiting for Lili-Mair's pediatric rheumy appt in Cardiff to come through(since september 23rd!!!) and when I spoke to the appts line they said that the dept has a 26-28 week waiting list so we should hear something soon.

In the meantime I have been told that the dr she has been referred to is highly unlikely to refer Lili to GOSH (from their personal experience)and I wondered about going privately. But I have many unanswered questions even after all my digging about the threads lol

How do you get a private appt? (Baring in mind we are in Wales not England)

I have read in various threads that people have paid for the first appt then have been seen after on the NHS. How does this system work?

Is it very expensive? We are not rolling in it(is anyone? lol)but would be able to scrape the money together if it was just for a one off.

We are getting absolutely nowhere locally with anything other than orthotics but even he can't give her the wrist/thumb braces he says she really needs but the referrals to OT keep disappearing within the system :twisted: so I really would like her to be seen in GOSH.

Answers to even one of these questions would be wonderfully helpful lol


Re: Private appointments

Postby nemonie » Fri Jan 07, 2011 5:46 pm

Are you asking about a private appointment to see Professor Grahame? Just a bit confused as this is in the GOSH section. He sees patients privately at St Johns and St Elizabeths hospital in London, which is near St Johns Wood tube station. I'm not sure if he sees children privately, although I'm sure I have read some threads about that very subject.
Finally diagnosed with EDS-H and POTS after 20 years by the lovely Prof G \o/
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Re: Private appointments

Postby mami2four » Fri Jan 07, 2011 7:52 pm

Sorry for not making myself very clear :oops: must be my frazzled brain after having the kids home from school lol

I was wondering how I go about (if possible) getting a private appointment in GOSH and if it is,is it then possible to go through the NHS afterwards. I was trying to find out before we go to Cardiff so I was prepared if he refused to refer her on.
Obviously seeing professor grahame would be wonderful but it was more what the clinic can offer as a whole.

Does that make more sense? lol


Re: Private appointments

Postby christianne » Wed Jan 12, 2011 10:24 pm

Hi It is possible to see Sue Maillard privately. She is head physio in the rheumatology section and it is her team that you would be seeing if you went through the NHS. I think she can then put you down for treatment through the normal system, I am not sure. She is very knowledgeable about everything to do with HEDS so would be able to help with some of your questions and signpost you to other specialists for other bits and pieces, e.g. podiatry, bowel specialists etc etc I know someone who went to her privately and she then wrote a letter explaining the need to be seen there which went to the GP and enabled PCT funding for 'out of area' treatment.
Aged 47, dx EDS 3,POTS, Coeliac, breast cancer 2002. I have 4 children: son 14 - HEDS & Coeliac, daughter 25 - HEDS, POTS, pernicious anaemia, daughter 27 - HEDS, Behcets syndrome, also daughter 22 & 3 grandchildren unaffected as yet.
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