Hydro and Physio

illihor Member Posts: 283
edited 4. May 2010, 19:36 in My child has arthritis
When Bristol came down how ever many weeks ago now the consultant seemed surprised and miffed that Kayleigh was only having hydro every other week and physio less often than that.

Today she has just had hydro (first time in a month) and they have finally started doing the sessions weekly so when I said yes we'll come next week I got the why bother she's doing well now why not make it two weeks time. Ermmm why should I do that just because she is good now what's to say next week she'll be bad/better etc. I've booked her in for next week but they weren't happy about it got the feeling I was taking up "space".

Secondly is physio, bristol mentioned that a 3 day stint up there might be in order to do some intense physio to get her playing and involving back into play like any normal 4 year old should be and not watching from the sidelines like she currently does at nursery. We had physio almost 2 weeks ago where Kayleigh did nothing but scream and although they have called up to book her in I wasn't in and when I got hold of them they didn't have the diary so said they would call me back, still waiting. The physio was there today at hydro and never said anything when I asked her.

I just get the feeling the MTX has kicked in so why do they need to bother with her now. I truly feel like they are shutting her out. Then I mentioned that I had an appointment with the school tomorrow and they might be getting a statement for her. omg the physio was disgusted and couldn't see why one would be needed and what the problem was she's obviously happy and doing ok.

Am i right in pushing the school to get a statement (well hardly pushing the inclusion coordinator collared me last week and asked for a meeting) but I feel i'm not getting any support from the local hospital at all. Yes Kayleigh is having a good spell right now but to think it's only the meds that's doing this inside her body is still not behaving why would the local hospital's physio's team start shunning her like this especially as bristol have ordered another mri and want to inject direct into joints, surely this says her improvement isn't enough. which were the exact words bristol said. not sure who to turn to at the moment.

Michelle xxx


  • speedalong
    speedalong Member Posts: 3,315
    edited 30. Nov -1, 00:00

    personally I would go for a statement if you can get her one. Particularly as you have support from school to help with the process. A statement is a good, legal way to obtain services for Kayleigh and is legally binding. If services and support written into the statement don't happen - you can fight for them to happen. Physio entitlement etc can be included on the statement. Ignore the physio - it's not her daughter and it's non of her business!!

    Well done sticking to you guns re hydro.


    PS IPSEA have a great website for parents re statementing etc and they also offer excellent, independent advice.
    I have had OA since mid twenties. It affects my hips and knees. I had a THR on the left aged 30 and now have a resurface-replacement on the right - done May 2010.