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ARRRGHHH!! Have to get another referral for DD1 to have new splints made!!

20 replies

SparklyGothKat · 10/10/2008 23:21

DD1's splints are getting too small, so I knocked on the door when we walked past after ADHD clinic. Anyway because the last referral was nov 2006, I have to now get another referral from the GP to get her new splints made.. WTF!!

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TotalChaos · 10/10/2008 23:23

how utterly ridiculous. does she not have a consultant who could talk some sense into them.

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SparklyGothKat · 10/10/2008 23:24

They said that I have to get a referral every 2 years!!!! She has Cerebral palsy FFS, it ain't going to get better...

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feelingbitter · 10/10/2008 23:25

Twatfaces! Still want some stuff - tis me, vicsta! Let me know width of straps and colours of velcro (see prev thread if you can find it). Hopefully it will tide you over.

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SparklyGothKat · 10/10/2008 23:26

yes please.. I will measure the straps. They can't even fix the velco for me without a referral..

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SparklyGothKat · 10/10/2008 23:27

well they can, but she would be without splints while they send them off to be fixed.. errr no!!!

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TotalChaos · 10/10/2008 23:27

ah I wondered who you were - I do hope you are OKish, just a bit concerned about someone changing their name to feeling bitter.

even gives those rules seems a bit silly that they want a non-specialist to do the referral.

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feelingbitter · 10/10/2008 23:31

God its bleedin crap (repeating myself, I know). I must seem soooo naive. I am fairly new to the board and I just cannot believe how people have to fight and struggle.
You can sew the velcro on top of the old velcro (short term measure) or, it might be worth a trip to the local shoe repairer/key cutter, they may have rivetting equipment. Would be at your own risk though.

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anonandlikeit · 10/10/2008 23:32

I've just had the same sgk, ds2 has broken one of his splints, used to be able to just phone up orthotics & make an appt for re casting but now we need referral from Physio for every appt.
Our last orthotics appt was only 3 months ago, its just delay & paper work for the sake of it, pisses me off!

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SparklyGothKat · 10/10/2008 23:36

oh and it will be january before they can see her!!!!

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SparklyGothKat · 10/10/2008 23:40

last referral was made nov 2006, she didn;t get seen until may 2007.. I used to use phone up and get appointments over the phone, but now we have to get a referral, its bloodly distusting!!

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feelingbitter · 10/10/2008 23:40

I'm OK TC Thanks. Thinking of changing it to feelingbetter in fact. Have had a tough week, DS is fine thankfully - I've just found it hard. We have been attending a new parent group on Mondays for the last 6 weeks, it was the last one on monday and the rest of the group had clearly made arrangements to carry on meeting, but me and the DS apparently not invited. Am confused as to why I'm so pissed about it, really wouldn't go anyway, just the fact that they kept it from me. And I thought they were all so nice. Neuro appt Weds EEG normal (again) which is good, I know, but still leaves us in limbo. And someone tried to top themselves off the car park roof, so we were stuck at hosp for hours! Bleedin 4mth jabs on Thursday, Gabe screamed so much he was sick on me. Last neonatal review appt today after handover to community paed. Gabe given the catch all temporary diagnosis of 'developmental delay with possible visual impairment' No shit! Anyway, as I said, feeling better now the weeks over. I just wish I could have a normal life sometimes.

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feelingbitter · 10/10/2008 23:44

Anon - that is complete crap. What area you in? As I said to Sparkly, I can help you with velcro etc. If you are in an area I work with, can wangle something, let me know.

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anonandlikeit · 10/10/2008 23:53

Thanks feeling bitter, i'm in suffolk.
Its actually the plastic foot part of his splints thats broken so i think it will be a re cast, thanks anyway.
Sorry you've had such a shit week, Gabe is sooo Gorgeous (but you didn't need me to tell you that).
ds2 is under the care of the community paed & for us it has been fantastic, she really knows ds2, really listens to us & tries to work for what we need.
Although the NICU paeds were fantastic in those first few months once we were outpatients they seemed to always be under pressure or time restraints & often we would be seen by a more junior DR, much better continuity with community paed & she is very good at kicking arse chasing appts.
Hope next week is better for you

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feelingbitter · 11/10/2008 00:03

Why's is everyone out of my area? I can only help on one thing and can't find anyone to help - buggar. Yes, recast definitely, but will gladly help you out in the future if pads, velcro required. We have already seen community paed once. God, I love her. It is in a more local hospital, small and in walking distance, with a lovely waiting area (big hosp like a zoo, everything like you said, tho we did always see consultant). She was so kind (cried, again)but reffered for portage and OT. Have had physio since 10wks which has helped tremendously. I am very lucky, have had a great deal of support so far. i think this week, being so busy and perhaps the end of one episode (the care in the hosp he was born) and the beginning of another (forever) has taken its toll. I will be fine. Gabe can laugh now. Can't be sad for long

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needmorecoffee · 11/10/2008 09:23

dd's splints are checked every 3 months since her first refferal 4 years ago. Its just part of the 'package'. The orthotics clinic should just do it automatically really.
We have to struggle for the botox though.

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Cappuccino · 11/10/2008 09:25

god sparkly that is rough

the physios should be checking her splints surely more than every 2 years surely?

how the hell is a parent meant to know if they are the right size or giving the right support? I thought dds were fine for ages and then it turned out her feet were popping out of them slightly during the day and they were no good at all

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deepbreath · 11/10/2008 09:45

We recently had this with my dd's piedro boots/orthotic insoles. Dd will not get any better either. If anything, her feet and legs will get worse as she gets older. I suppose they think we all love to have free splints, boots, and insoles for our children that don't really need them, don't they?!

At the start of the Summer holidays, Dd had a big growth spurt (part of her condition), and her feet seemed to shoot up over a size almost overnight. The boots were so small that they blistered her big toes.

Orthotics claimed that dd's referral had run out, and I had to speak to orthopaedics to get it OK'd. To make it worse, the orthopaedic surgeon's secretary was on holiday for a fortnight and I could only speak to her to organise the re-referral. When she came back, it turned out that they had ALREADY sent the re-referral to orthotics, and dd could have whatever appliances she needed for the next 5 years. Dd has been in pain and struggling because someone just didn't read it properly

Knowing how long it takes to get a pair of boots that are apparrently "in stock and we can get them in 2 weeks" (6 months, more like) I bought her a pair of Hush Puppies to wear to go back to school. The shoe fitter had to put 2 pairs of insoles in them to make them fit dd better, but dd's feet and legs are so sore, and the bit of walking that she can manage looks awful without the support of the boots.

Dd has had her "fitting" appointment last month, but has to wait another month to get the boots and insoles.

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SparklyGothKat · 11/10/2008 10:02

Have been getting boots and splints for 8 years (for DS1) and 7 years for DD1, and they are never seen inbetween new splints, its a shamble here.. I never even realised that they should be seen inbetween splints until someone on here said they should be checked. I am seriously thinking about asking if GOSH will just do their splints now, its about an hour drive, but it would be worth it...

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needmorecoffee · 11/10/2008 10:27

either they think we should know when splints need doing or they assume we are stupid and patronise us.

DD will end up with more botox and then surgery cos of lack of services. (she gets foot splints easily but hand splints are the OT's job and she's like Lord Lucan!)
Sparkly I did change hospitals for dd's splints. The OT's splinting clinic at the nearest hozzie was always full months in advance and dd eneded up with serious contractures that we're still trying to deal with. So bitched about it during botox and soft tissue release surgery to the Ortho sugeon and he reffered her to his OT woman at Children's. The orginal OT then got pissy for some reason but I said I don't care, dd comes first.
She's never had piedro boots though. I'm guessing cos she'll never walk they haven't bothered??

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SparklyGothKat · 14/10/2008 13:24

went to physio yesterday and complained about having to get a referral again, and she gave me some velco to fix DD1's splints until we can get the splints sorted properably.