Hospital refusing dd's referral?

[HauntedNoddyCar]

Dd's been referred by our gp to the hospital for assessment for ASD. School have supported the referral and are treating her as if she definitely has Aspergers. Which is great.

We got a letter today from the hospital which I opened when I got home after school had finished for the year.

They are declining to see her and suggest that the School Nurse sees her and the School Nurse can re-refer her if required.

What?

I don't even know if there IS a school nurse and I can't bloody do anything for 6 weeks.

Can I ask the gp to challenge this? Can I challenge it? Why does the school nurse trump the gp AND Senco?

I knew this was going to be a long process but really?

(part vent part advice seeking :) )

[fairgame]

That's really shocking that they have declined the referral.

Your school will have a school nurse attached to it and they usually work through the holidays as well (i used to be a school nurse).
Some areas require the school nurse to do a general assessment before they accept a referral. In my area they are leaning towards the school nurse doing more of these assessements then referring on rather then relying on GPs so much.

Get in touch with the school nurse asap, your gp should have their number.

[HauntedNoddyCar]

Ooh fair thank you! I will ring the gp's in the morning to find out. I can't understand whether this is policy and the Senco doesn't know it (unlikely) or some random hurdle.

I have a vague memory of the Senco saying to me that if it were impacting on her academic performance the school would refer but they can't because it isn't. Except it is but she's bright enough to do badly and still be getting all 3s at KS1. And be bullied in the playground. So she hides her light as her teacher told me last week.

[fairgame]

It might be something to do with how the GP has worded the referral. A lot of GPs will often refer to health visitors or school nurses before sending the referral off. My local ASD assessment pathway really doesn't like referrals based on school observations and school are absolutely not allowed to refer to the pathway. This is because some schools like DS's old school seem to think every other child has ASD and the pathway lead is also a fussy bugger and possibly on the spectrum himself.

Welcome to the rocky of road of getting a diagnosis

[HauntedNoddyCar]

The irony is that the initial flagging up came from a third party who was happy to do a supporting letter but was taken ill and hasn't done it. I haven't had the heart to chase her while she's ill. We followed it up with school who went "Oh now you mention it up..."

[chocisonabikinidiet]

I would take it up with PALS. I would not accept that they refuse the referral. Pushing for things and complaining is unfortunately often the only way to move things when it comes to Asd.
Good luck!

[HauntedNoddyCar]

Thanks choc. I may pursue that line too. I'll take it to my MP if I have to.

[LadySybilLikesCake]

It's the same here. Cahms wouldn't see ds as they 'don't assist with a diagnosis' . I've been told to get in touch with the school nurse. There is one in school (private school) who deals with cuts and grazes, but she's not qualified to deal with a social skills delay (which is why they were asked to see him). Honestly, the system isn't set out to support parents and help children!

[HauntedNoddyCar]

Oh LadySybil what innocents we are!

[LadySybilLikesCake]

Yup. In the mean time, ds is now 15. In a couple of year time he won't be able to access cahms as he'll be too old. He won't be their problem then, so it won't be their problem if he's beaten up because he's said a comment to a random stranger at the bus stop! I don't know what I'm supposed to do other than go private and pay.

[HauntedNoddyCar]

That is worrying isn't it? We do at least have a bit of time on our side. Dd is 7 and the differences between her and the other girls is starting to show but I think we have a year or two before she realises how different she is.

[LadySybilLikesCake]

Yup. His teachers try to help but he struggles at school with the other boys. He's mature for his age, and doesn't know how to handle things when other kids are rude or push in queues (or when people smoke/swear etc). I try to explain things, and he gets it, but it doesn't go in. It's more 'people shouldn't do that' rather than 'I shouldn't say anything', if you know what I mean. There's no obsessions or need for routine, it's just this. He does have sensory problems too and dyspraxia but the sensory problems seem to be getting less.

Have your school helped? An understanding and patient teacher can do wonders.

[HauntedNoddyCar]

Yes I can see exactly what you mean about not reacting like everyone else and how that's going to get him in harms way.

We've been very lucky with her teacher this year. He's been very good even before this was raised. Far better than her previous teachers and I am really sad she's leaving his class

[neverputasockinatoaster]

DD's referral has been refused by the comm paed team. The letter said they wouldn't accept a referral unless school saw significant issues ( they don't because she masks well at school).
DS has been refused by cahms twice now because he doesn't meet their criteria ( is he isn't suicidal)
I am unsure what to do next.
I suspect DD's new school might see issues as she will be anxious but it grinds my gears that we cannot get any help for her.

[HauntedNoddyCar]

It is infuriating never. You do begin to wonder if they know what they're doing. And it makes me so cross that because her problems are in the playground rather than obviously in the classroom then it doesn't matter.

[neverputasockinatoaster]

Thing that really pisses me off is that when I say I think she has an ASD, possibly PDA, the school staff all agree with me!
We are changing schools in September from Notts to Lincs. I'm hoping that lincs are better as regards ASD than notts. DS has a DX of asd, this year he got 15 mins a week support from a TA to talk through his week...... and he got to go to a lunchtime club for children who were struggling with the playground.......
Last year ds got no support at all. It took me having a breakdown and being signed off work to get any support for him ( my breakdown was triggered by him attacking me in the park. He attacked me because he was struggling with bullying in school. Sadly the bullies were two members of staff and I will never forgive them)
I am going to see my gp again because this is rubbish.
Our kids need help and support.

[LadySybilLikesCake]

Oh, I'm in Notts! We moved here from Derbyshire. The paediatrician in Derbyshire said ds wasn't on the spectrum, he was mature for his age and very intelligent, and would be happier as an adult as he'd be more accepted. The one in Nottingham thinks he's on the spectrum (he only has a social skills delay). The OT diagnosed him with dyspraxia, the physio diagnosed him with hypermobility. Other than 4 sessions with the OT and a very useless physio, we have no help at all (school helps a little though).

I'm tempted to pay for private help for him but I don't know where to start looking. He's on a waiting list to see a child psychologist but she's based in London and it will be a real pain to get him there if it's weekly sessions. I don't know what else to do. They don't diagnose properly, then send you on your way without knowing what to do or where to go.

[Schoolsoutforsummer]

I don't know if this is the same nation wide but our regional Autism group is amazing - you ring them, they listen, they know what is happening locally and can cut through all the double-speak.

I used a consultant psychiatrist for the autism diagnosis and then, went back to local services. Sadly, most of the help DS1 and 2 have had, has come from the private sector.

I was told that you can ask for an out-of-county referral to GOSH or the Maudsley and both do ASD dx.

[fairgame]

I live in south yorks and DS is due to start at an indie special school in Notts in September. Attached to the school is the Elizabeth newsome centre which does private asd diagnosis and specialises in pda. It might be worth those of you in Notts giving them a ring for advice? Im sure the school said that the centre have a free advice line

[StarlightMcKenzie]

Make a complaint to PALS and include that the situation is significant enough for you to be considering Home Educating until diagnosis and therefore subsequent support so as far as you are concerned a school nurse is not accessible.

[LadySybilLikesCake]

Ds is at a private school so I can't see them giving a fudge to be honest.

[neverputasockinatoaster]

I have emailed the Elizabeth Newsome place several times to request information about a private assessment and have been ignored.
DS was diagnosed by a comm paved from notts. I tried to get DD referred to her but she refused the referral because it now needs to come from a key worker....

[HauntedNoddyCar]

We're down south. DH is suggesting we try the private route but that's another thread I guess.

It has dawned on me that the letter is actually to the GP and we're cc'd in which probably means it's back to the GP first.

The last 2 or 3 weeks have been ridiculous with illness and GP trips/calls.Three for me and three for dd so I will chase up next week.

The thought of HE with Dd gives me the horrors but I'll bear it in mind as a chip to play.

Thanks again.

[MeirEyaNewAlibi]

Ring the school nurse yourself. She'll probably be the only person as fed up with the situation as you. There might not even be one; round here the vacancy rate is horrendous.

I can't imagine many overburdened school nurses are happy with your area's suggestion they should single-handedly diagnose and manage ASD alongside all their other work.

[LadySybilLikesCake]

I'll drop her a mail when they go back in September. It's crazy!

[MeirEyaNewAlibi]

Some school nurses work over the holidays. No need to wait