Who to see at GOSH?

Who to see at GOSH?

Postby pinkiepunksmummy » Sat Aug 20, 2011 12:22 pm

I am sick of the CBA approach to my children's care locally, so am going to ask GP for a referral to GOSH.....and not take 'no' for an answer any more. Do I need to ask to be referred someone in particular, or just ask for the HMS clinic?

The older the children get the worse and more noticable their symptoms and pain are, this is not being taken seriously. Currently the children are seeing a physio who has given me a printed sheet of ankle excercises, but will not commit herself further. The children have no OT, as ours left, and we seem to have been 'lost in the system' again, the referral promised for DD2 has never been made and she has never been seen by OT. It took me a year of nagging, chasing, reminding for her to by seen by the orthotist. DS has been waiting for months for a referral to the same orthotist who offered to fit him for knee splints, but physio has 'forgotten' to okay this. Again. DS's eyesight is getting worse and worse....he is down to two-monthly tests :( now, his orthoptist thinks his sight is starting another big decline :( and DS has just been diagnosed with a Severe Phonological Speech Disorder :( after four years of speech therapy he has made no progress. DS and DD1 are waking every night in pain, both are on pain meds daily. Paed. is no help and just want them both off meds....he refuses to prescribe effective pain meds for DD1. The children haven't seen him for almost a year...it is supposed to be 3-monthly appointments. He took DS off the waiting list for accu-pressure as he didn't agree with DS being treated at that particular clinic (NHS). DS has outgrown his wheelchair. DD1 is 11 and can walk about as far and at the pace of a toddler. They are not ever going to have any more hydro therapy (the only thing that actually seemed to make difference) as apparently there are 'other children with a greater need' - although the other HMS children have been allowed to carry on with their sessions.

This is just the tip of the iceberg, but I really am determinded this time that I WILL get referred somewhere and see someone actually cares. TIA
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Re: Who to see at GOSH?

Postby fussymum » Tue Aug 23, 2011 9:32 am

Hi , :hug:
Sorry that you are not getting the help you need for your children. Its hard when you can see the things you know will help your children but cant reach them. Are all the children confirmed hms? If they are it will make referal easier. I took along the details of the Gosh and the named dr for the clinic (available from the sites home page). It took 3 years of asking till we got a referal.
We got to gosh last May and it was everything and more. We didnt see the dr we requested but the dr we saw was fab and informed as was the physio who was part of the consultation.
In short a rheumatolgists confirmation and referal by your peadatric consultant should get you to gosh. It may take a bit of foot stamping.
Please do feel free to pm me. Keep up the good fight.
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Re: Who to see at GOSH?

Postby emmajordan » Fri Jun 13, 2014 7:55 pm

If I you are looking for a diagnosis you would want to see Prof Grayham who is not at GOSH. He is at St Johns and Lizzies and is the most knowledgeable and respected.
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Re: Who to see at GOSH?

Postby loosebones » Sat Jun 14, 2014 4:54 pm

mod note - this thread has not been active since 2011 so the information posted may well have changed over that time x
"Just when I got my head together, my body fell apart".
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