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referral request returned to GP by Community Paediatrician - Help! (ASD related)

(34 Posts)
bigmouthstrikesagain Thu 07-Jan-16 11:52:17

Hello

I have one child with a diagnosis 'HF' ASD and she is currently under the care of the community paediatrician and has additional support at school etc. However it is pretty clear to us and the school that our ds aged 11 is also HF asd and he gets additional support at school but needs an official diagnosis to ensure he continues to get that support ( in yr 9 he will go up to high school and will struggle with the transition without the right support and understanding) and ds wants the assessment.

We went to the GP in Nov '15 to request a referral and took a supporting statement from the SENCO at his school and a statement was written by me and ds and the GP said he would request a referral for a community pediatrician to see ds. I decided to chase this up with the Children's Centre today knowing that we have needed to for all of dds appointments.

The secretary informed me that the referral had been returned to the GP - but couldn't tell me why hmm - it had been returned before Christmas but no one contacted us. Frustratingly the people I need to talk to at the GP are in a meeting so I cannot find out more ill after 2pm. Argh.

I am worried that the referral has been rejected. How common is that? Is there any questions I should be asking? I would really appreciate advice and experience of this situation. Thank you.

PolterGoose Thu 07-Jan-16 12:13:10

Is it possible that assessments for older kids in your area are done by CAMHS?

Good luck finding out flowers

bigmouthstrikesagain Thu 07-Jan-16 12:45:13

Thank you Poltergoose - I would have hoped that the GP would know this confused I am hoping that the issue is administrative an will be resolved easily but I have that pit of the stomach feeling that it is going to be something more akin to rejected due to lack of interest and we will then have a battle.

I am pretty disillusioned by the paediatric care in our area after a review meeting for dd that involved no real questioning by the doc, but she blithely started talking about a prescription of anti-ds for dd after we mentioned school related anxiety.

bigmouthstrikesagain Thu 07-Jan-16 13:01:58

Ok after googling CAMHS in our area do not accept ASD referrals so it is the childrens centre I need so I will just have to call and find out.

PolterGoose Thu 07-Jan-16 13:03:01

Hopefully it's something as simple as GP didn't send right form or similar. I know ds's referral went to wrong place first time.

bigmouthstrikesagain Thu 07-Jan-16 13:05:24

(crosses fingers) cheers.

bigmouthstrikesagain Thu 07-Jan-16 14:19:02

FFS - there is a gap in provision for over 10's in this area (bedfordshire) - the rejection letter gives no indication of alternatives - I am going to GP next week but will see what I can find out in meantime!

bigmouthstrikesagain Thu 07-Jan-16 15:13:13

There is no provision to diagnose children with suspected ASD between 10-18 in Bedfordshire as of Nov 2015. There has been a funding/ resource issue for some time and it clearly came to a point of no return at the end of last year. I am not sure how well known this is - should I be publicising it in a separate thread! I am still processing the information....

PolterGoose Thu 07-Jan-16 15:38:13

shockangry

That's atrocious, definitely worth broadcasting.

Your GP could refer for a private assessment (quicker and probably cheaper than NHS!)

bigmouthstrikesagain Thu 07-Jan-16 15:54:12

i will be shouting it from rooftops - on hold to NAS at the mo and have spoken to local autism charity and the school SENCO - who had no idea - I shall also get my local MP on board I think.

As far as a private assessment - is that as helpful as standard NHS - regarding access to support services? I am fucking fuming - but I don't really blame the doctors they are clearly under huge pressure...

PolterGoose Thu 07-Jan-16 15:57:16

If it's with someone reputable then it should be fine. Talk to your GP first and see if they'll fund it.

MeirAya Thu 07-Jan-16 16:20:41

If they don't havd a block contract, for something that's necessary, then necessary assessments should be individually commissioned. eg
The paperwork and hassle involved might make them think twice. Alternatively, you could ask to go to great Ormond street social communication disorder clinic.

It's mostly for second opinions, but if they're not able to do a first opinion...

bigmouthstrikesagain Thu 07-Jan-16 20:32:08

Thank polter and meir I shall definitely ask about those then before I start writing to my MP!

bigmouthstrikesagain Mon 11-Jan-16 11:22:17

Hi - I have been to the GP and they are adamant that the only 'pathway' they can follow is the one that doesn't currently exist! hmm

I asked about out of area/ alternative services and the GP just said there is no alternative we can authorise. So I am left with the impression that if I had not chased it the GP would just left me waiting until the care commissioning group come up with the goods then resubmit the request. It is only because I chased it that I know about the gap. The letter from the children's centre rejecting the referral is dated 15.12.15 and was only sent to the GP.

So what now? I can wait for the care commissioning group to fill the gap - but realistically how long is that going to take?

Runningtokeepstill Mon 11-Jan-16 12:11:54

I think I'd be seeing my MP at this point.

I'm someone who has put in an official complaint to my care commissioning group about a gap in service for under 18's with chronic pain syndrome in my area. There is an integrated service for over 18's and integrated services are seen as the most effective way to help with chronic pain. It takes a while for the complaint process to go through and, in my ds's case, it didn't get him any local help as a result.

bigmouthstrikesagain Mon 11-Jan-16 12:40:05

I am really sorry to hear that running - I hope your ds is ok? If the services for under 18's are not provided in your area are you at least being refrred out of area?

I am stunned that it is acceptable for a health authority to just not provide a service at all. If there is a gap in provision then resources need to be allocated and that may well take time but surely they should be empowering the GP to use alternative/ out of area services in the meantime? It just seems nonsensical that no one age 10-18 is entitled to access to diagnosis in this area!

Runningtokeepstill Mon 11-Jan-16 13:09:15

Yes, bigmouth, he did get seen by an out of area service but only because I researched this myself and emailed the service to see if they would accept a referral.

Unfortunately, although ds attended a week long assessment there, with some treatment, the out of area service mainly provides 3 week residential courses in managing pain and ds didn't believe it was worth risking taking this time out of his studies to attend. And they found him hard to work with as he didn't really get what they were trying to do in the psychological sessions. He's now waiting to be assessed for ASD as they felt this might be complicating his progress. I have no idea if he has ASD as he doesn't present typically as having aspergers which is what they suspect. There is a service to assess in our area although it has had some publicity for being very slow.

bigmouthstrikesagain Mon 11-Jan-16 13:14:19

That is interesting Running - I have a list of 'local' services from the NAS (nat Autistic Society) that includes hospitals in London etc. they all require a referral but I wonder if I speak to them they would accept a self referral in these circumstances?

The NAS are helpful for information if you are unconvinced about your ds presentation - I have had doubts about my ds but as he gets older certain 'quirks' are becoming more like set behaviour patterns and they are strongly indicative of ASD.

Catgotyourbrain Fri 15-Jan-16 00:14:04

I'd be super cheeky and ring the Michael Rutter Centre (part of the Maudsley in South East London and specifically there to diagnose autism) and ask how to get referred to them. They see children referred from near and far.

Runningtokeepstill Fri 15-Jan-16 09:44:32

To clarify, in my ds's case I researched and contacted the out of area service myself to see if my son fit the referral criteria but the referral then came from our GP. I went back to the GP after I'd emailed the service and been told ds appeared to be someone they could see. We're lucky in that the GP is sympathetic.

But I'd have thought you would have a stronger case than we had. In theory (not in practice in our situation) young patients can get help for chronic pain from individual services, it's just that integrated services have been shown to be more effective, which is why the adults get that. However, no-one else is diagnosing autism in your area so surely ds should be referred somewhere for this as he currently doesn't have access to anything. If the centre at the Maudsley say they can take the referral, surely the GP will go for this, or find another suitable alternative.

I hope things work out for you.

bigmouthstrikesagain Fri 15-Jan-16 17:47:38

Well this area is a fucking shambles.

I have tried to get to the bottom of who is ultimately responsible and I have found the commissioners and the service providers are in a Mexican stand off. Each blaming the other for poor provision, each saying it depends on the progress in meetings and on funding decisions and service shake ups that will improve the local services one day... maybe..? But not today and who knows when? as they fucking don't!

So I am a little stressed out and pissed off. I have been told by the commissioner that they are currently deciding whether to allow referrals to the Maudsley but as there are 8 month waiting list she is not sure if it is better just to wait for local provision - I have to say why not bloody both. But at least ds would be on a waiting list rather than waiting to be on one!

GruntledOne Fri 15-Jan-16 18:11:11

I agree you should see your MP. I would also suggest contacting a barrister called Steve Broach who is quite keen on investigating possible court actions about this sort of failure. If he thinks you might have a case he will probably refer you to solicitors who specialise in this area. I suspect everyone concerned might suddenly discover that they can sort this out if they're looking at explaining themselves to a judge and paying out thousands in legal fees.

bigmouthstrikesagain Thu 21-Jan-16 12:33:41

We are being referred to the Maudsley via the GP - a relief as we can bypass the local service lack entirely - no doubt there will be a loong wait but it is good to feel in control of the process again.
flowers for all the excellent advice. Poor ds is really struggling with school anxiety at the moment and it is not going to get easier - but a diagnosis and assessment process may help us access support and understanding. so thank you.

bigmouthstrikesagain Thu 21-Jan-16 12:34:16

I shall still be complaining about the issues locally of course.

PolterGoose Thu 21-Jan-16 12:46:21

So pleased he's been referred, good luck and hoping for a not too long wait flowers

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