Well we went to see the Rheumatologist (the physio and the paediatric) and in we raised our concerns.
We explained about how Becca is in pain a lot of the time especially when she comes out of school and towards the end of the day. Even gave her a letter to show that I'm having to take medicines up to school the majority of the time. Rheumie examined Becca and said that there was no inflammation at the moment in the joints or any restriction of movement - almost felt like by her saying that Becca shouldn't still be in pain.
We discussed Becca's meds and she looked shocked that she was taking so much and it still wasn't working. I asked about any support for her knee when it hurts ie a brace, apparently they don't like bracing a child and will only brace an adult's joint; this is so that the child uses the joint and muscles to make it stronger - sorry don't buy this, it just sounds like they can't be bothered to help her.
I asked the doctors "so where do we go from here then?".......
.......and they're brilliant answer????..........
......"Well I can't do anything for her so we'll refer you to the Paediatric Pain Clinic in James Cook Hospital (this is the other hospital near us) and we'll discharge you from this clinic as I don't think we'll need to see you again as yes Becca is hypermobile but she's by far not the most severe case we've seen"
When asked what about exercises and physio etc they said the Pain Clinic is multi-agency led and this involves their own physios etc so now got to wait for the appointment to come through from them *insert a dirty big great sigh*
Gonna see what they come up with and if still not satisfied then going to ask them for the referral to Great Ormond Street, just so fed up with the system now! :(