Rant

[Marne]

Sorry, just need to rant, please don't feel you need to relpy .

We are trying to get dd1 a trike (through funding), tomcat have been out to try dd1 on a trike, they decided she would need some extra support due to poor balance and low muscle tone. So they are all ready to make a trike, Cerebra are ready to fund, all i need is a letter from her Pead or GP.

Our GP is useless and refusses to write letters so we decided to go through the pead who diagnosed her. Anyway just received his letter which says that last time he saw dd she had no problems with movement or muscle tone (this is bullshit) and they should be getting a letter from someone who specializes in low muscle tone. We have been trying to get OT input for a year (we have got no where), the school say her movement is getting worse and she's getting pain whilst swimming yet our GP says there is not a problem. Im sooooo angry as there clearly is a problem, my dd cant even push open a door or unscrew a lid, she struggles to run and has very poor balance.

Dd1 has a dx of Aspergers but shows a lot of traits of dyspraxia.

I have made an appointment with the another GP.

Why wont anyone listen too me .

My dd is getting more and more upset and depressed because she can do things her friends do.

That sucks, Marne. I hope the second GP listens and writes the letter.

I hope so, the last GP we saw said that we should get her dx of Aspergers removed (after seeing her for 5 minutes), he didn't even check her legs. It makes me angry that they can judge a child from a 5 minute appointment and they make out us parents are making it all up.

School have tried to get a referal back to the local pead and OT but this was almost 6 months ago and we still have not had an appointment with anyone.

Some GPs really are in the wrong line of work - the best one can hope for them is some sort of karmic retribution.
As for OTs, I know we live in different areas, but what's with the waiting lists? We have been waiting for almost a year

We tried to get OT for dd2 last year (ASD) and we were told that the OT no longer see's ASD children due to staff shortages .

Sorry to hear that, Marne. I've had my share of useless GPs and I understand how frustrating it is. Keep trying with another one - ours will write most letters but charges us for it.

Thats very poor. Can you put in a complaint to the PCT, it may get you somewhere.

How annoying, but you know some medical professionals, like some other professionals, just cannot be bothered to do anything additional.

We have an NHS OT. She's been seeing DS for 8 months and he still has bi-monthly reviews for low muscle tone, poor coodination, sensory problems, hypermobility and all the rest of the Aspie physical stuff.

I asked her to do a letter in support of our DLA application - her answer? She couldn't say he needed more supervision than his peers

Mmmm, that'll be why she recommends daily support in school and a sensory diet and daily desentisation and handwriting exercise, and daily practice using cutlery and a pencil and blah, blah, blah,....

Of course, CAMHs don't want to know as he's no longer on their books and the GP wants paying to write a report!!

Blardy useless some of them....I feel your pain!

does it have to be the GP or Paed or can it be any healthcare person?
i think we used the community nurse for ds's Tomcat thru Children Today and have had the HV write letters of support before too

I was told a GP or pead for one letter and then a letter from someone else (eg, teacher), we managed to get a letter from her teacher.

She has a doctors appointment today at 11.20, i have made a list of all her problems and i'm not leaving until i get a referral for physio or OT, i'm fed up with being told 'there is nothing wrong' when there clearly is. Wish me luck.

Good luck!! Let us know how it went

Well, i think it went well .

Gp has asked for a report from the school, he looked at her feet and said they were quite bad, he said he needs to know who the school made a referral to before he can make a referral. He still seems to think that dd1 has not got AS (she clearly has). I have spoken to SENCO and she's going to try and write a report in the next week and post it to the GP. Fingers crossed we will get referral to Physio or OT. Maybe we will eventually get a trike for her.