THC - I am this close to writing to CXO of GOSH to point out their DDA failings on your behalf, it is ridiculous. I am soooo 
Bizzey - you are not making a fuss about nothing. A condition does not need to be life threatening to warrant a referral to see specialists. I hope you have more success with this gp.
appropriatelytrained - welcome to the thread, I am sorry I can not help re Southampton paediatric rheumies, not in our area at all, but have to tried googling the hopsital and the rheumie team and seeing if they have some bios up...it can give you a bit of a heads up.
auntevil - extra arm of chromosome 9 is new to me. Have you been told this by the geneticist? I agree with THC, the school have got no right to complain about having to wear different shoes, they have to make reasonable adjustments, and this adjustment is costing them nothing. Write a little letter to point that out to the chair of governors and the Headteacher, copy it to the governor with responsibility for SEN and safeguarding (health is a safeguarding issue too) and remind them of their responsibilties under the Equalities Act 2010. Blardy schools.
Have to say my ds's Headteacher told him he shouldn't worry about what he has to wear in order to get to school, he could wear slippers in school, which are are trying to find some ones with backs (who knew that was so hard) and he could wear pink fluffy pyjamas as far as she was concerned, she just wanted to see him and him to be happy.
Ginger - my ds has urinary problems and some fecal incontinence, but his are related to spinal pressure, rather than poor muscle strength of pelvic floor or similar. My sis though who has eds only more mildly, has never been able to tell if she needs a wee or a poo, not incontinent just poor signals....am sure this is eds related. although she has never shared this with the rheumie, so who knows. My ds had bladder and kidney scans to make sure the muscles were working properly, was just ultrascound scan, quick painless, and well worth it, so you could ask for it, it is clearly a major problem and warrants further investigation. He also did some bladder training exercises, and follows a frequent urination timetable, which have helped him when he has spinal pressure because his bladder is never as full.
You are managing to do lots of activities, more than my ds could ever manage, well done you. Not sure there is more that you can do, if you have physio under control. Physio is a struggle for most of us on here, motivation, time, dc playing up over it. etc.
Ooo long message.
The baby Gp had a infant gp with him yesterday (student doctor) neither of them knew what they were doing, but both very sweet. Are going to refer ds to orthotics at hospital for their help in shoes, he has to take NSAIDs for a couple of days to see if that improves the swelling in his toes. e shall see.