Need advice re APD please

[moosemama]

Hi all Moose here

I'm posting for a friend of mine, who knows I am asking for this advice and is ok with it.

Said friend has been trying to get the school to take her dd's problems seriously, but has met with a lot of resistance and stonewalling. She came to me for help because she knows about ds1 and that we are 'in the system' so-to-speak.

I suggested she went through GP, as she initially thought AS. GP referred to Comm Paed, who thought dyspraxia, although heavens know why as this little girl is well co-ordinated,with no obvious motor problems. Paed referred to OT and discharged at that point. OT assessed and said not definitely DCD, but there seem to be a lot of sensory issues going on and that she needed to be assessed by EP, then discharged.

SENCO refused to accept there was a problem and flat out refused to refer to EP. The poor girl is still not even on SA, despite just about to go into year 2 and unable to read or write at all, is seemingly unable to listen to and take in verbal instructions, has regular 'big tantrums' out of sheer frustration and is also having wetting accidents at school several times a day.

She is being fed the usual 'emotionally immature' line by school, although her dd's teacher has finally just agreed that perhaps drawing up an IEP might be an idea. (Suspiciously this was after found out and told her that she could self refer to EP and gave her the details on how to do it.) Because paed and OT both discharged with no forward referral, I have advised her to go back to her GP, but after the nonsense the SENCO has been feeding her she is worried she won't be taken seriously.

Now, she has been doing some research and thinks the closest match to her dd's issues seems to be APD. The thing is, I have no idea about the best way to get this recognised/dx. I know that normal hearing tests won't pick it up and that that is all she is likely to be offered via the usual NHS route.

Can anyone advise me/her/us of the best route to take to get her dd assessed for APD and how to make sure she gets referred the right people?

She doesn't have any money for private assessments, so we need to find a way to get her help via the NHS if at all possible.

The only place that diagnoses APD on the NHS is GOSH. DS (11) has an appointment in August other others on this board have been. DC have to have a tertiary referral - ie via hospital dr like comm paed so would need GP referral to comm paed and comm paed would need evidence on which to base any referral. Private EP assessment is the way to go. In our LEA the schools have a devolved budget and so EPs are willing to visit IF the school is willing to pay £500. Information provided by assessment can then inform the apprpriate next step and may be necessary for increased support in school and onward referral.

Google Dolfrog and also search his previous posts on here - he runs APDUK and is the person to speak to. There is a helpline number on the website.

Thanks Keepon. I had a feeling about GOSH being the only place, I told her that yesterday, but said I'd check.

I have passed on the details of Dolfrog's APDUK website already.

She can self-refer to EP, but may end up on a long waiting list, it depends on their current caseload though. We were fortunate enough to be seen within 48hrs but ds1 was in a really bad state at the time, so a priority case. There's no way she can afford private EP unfortunately.

Wherever she goes they just tell her to go elsewhere and it sounds like without EP involvement she's going to struggle to get a referral. Best advice I can give her, under the circumstances, is to call the EP line and push for her dd to be seen, then go to GP with the EP's findings in order to get a GOSH referral.

GP can't refer to GOSH - referral has to come from secondary rather than primary health. But may need EP report to get GP referral back to comm paed and then GOSH.

I think an EP would be a good next step for her.

APD does not explain all her symptoms.

Sorry Keepon, that's what I meant. That she should get a GP report and then ask to be referred back to comm paed, so she can ask for a GOSH referral.

I know Indigo - I'm not convinced it's APD myself. I've known her dd since birth and although some of her symptoms fit, there's a lot more going on. I think they need at the very least a good EP. A developmental paed would be preferable, but there are none in our PCT.

Spoke to her this afternoon though and she has been back to the GP and got the GP to refer to EP circumventing the school, so that's good news. Hopefully it will be the start of them unpicking what's going on. Just hope she doesn't end up on a ridiculously long waiting list now.