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Aarrghhh! Just seen DDs NhS paediatrician

20 replies

osospecial · 03/12/2013 18:12

Sorry just really need to rant! She has come to the conclusion after we saw a private paed who dx ASD that she thinks dd does have ASD and not just language disorder and is at the higher end (more severe I think she meant not high functioning) because of lack of progress with her language. Great. (not great about the ASD obviously but I have come to terms with that a while ago now and as we are in middle of SA just thought NHS dx as well might help and she finally stopped sitting on the fence) But the panel meeting to make the official dx has been delayed again due to somebody being sick or something.
Anyway, after telling me this she later goes on to say she thinks LEA will probably decide dd is best placed where she is (an observation and assessment unit which was supposed to be a temporary place for 2 terms) while they see if her language improves by the time she is about 5 or 6!! She is just 4 now. She wants her to stay there another year or two!

I want a place in a local ASD unit and mentioned this place and she said, you don't want her to go there are they only send really severe cases there and you don't want to lump her in with them as it might do more harm than good, or something like that! And it all depends what resources they have as they dont have places etc etc. She should only go there if she doesn't improve by the time she is 5 or 6.
I'm so angry as in one breath she says dd is severe and she is not making much progress in language and 'if she doesn't gain language skills by the time she is 6 she will have problems for the rest of her life' (last appointment) but then says let's just wait and @:&**## see in two years and send her there then!
She also said something about as the curriculum is all language based, without gaining these skills dd won't progress. She hasn't got a clue about the importance of early intervention, lets just wait until she fails and then do something! And when I suggested that actually dd is very capable of learning but needed to be taught in a different way she just didn't comment.
She is also still suggesting the 'language unit' would be good otherwise, (I have seen this unit, it is one tiny classroom in a school i didnt like very much with 3 boys aged about 8 yrs old) I keep telling her I don't think this is the right option for dd!
Sorry that is so long, just feeling so let down that she is not going to be any help in getting dd the support she needs. So glad I have the private paediatricians report and her recommendations.
She agrees she wouldn't cope in mainstream so you would think the local ASD unit would be the obvious choice as she does actually admit dd has ASD now!

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cansu · 03/12/2013 19:05

I would cut her out of educational placement discussions. it isn't really her remit anyway. her job is to diagnose so smile and disagree politely or make non commital statements and just make sure she puts her diagnosis in writing.

osospecial · 03/12/2013 19:28

I think I managed to disagree politely and bite my tounge. its hard when she comes out with some of her statements though (she constantly contradicts herself and makes inaccurate statements about dd). I'm just quite shocked and disappointed and I'm not sure why as I've heard plenty of similar stories. I've heard my LEA has kept DC in the observation unit for up to two years as nowhere to move them on to and that they wait for them to fail at age 5/6 before providing places in the ASD unit, I suppose I was just expected better from the paediatrician. Its no wonder that its happening if the paediatrician is even suggesting this. Surely they should be on our DC side not the LEA?

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osospecial · 03/12/2013 19:34

I have to go back and see her again as she is actually doing the medical for the SA process in a few weeks.
Thanks cansu, I hope she does get on with it and write the dx down, all this 'ASD assesment panel' is ridiculous, we have been seeing her for 2 years. To delay by a month every time somebody is off sick, can't they just have somebody else stand in. Sorry, will stop ranting now!

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wetaugust · 03/12/2013 22:54

I agree totally with Cansu

Ignore the Paed - they have no idea what's best educationally. But don't expect the NHS to support your choice - they won't show open support.

Best place for a child with ASD is in an ASD unit. If you delay you may fiind you have more difficulty getting her a place as they will be snapped up very quickly.

osospecial · 03/12/2013 23:23

Thanks wet, I think the best place is definitely the ASD unit, I've looked at all the options, I definitely don't want to delay and plan to try get the place as soon as possible (in the middle of SA). I'm just disappointed that even though now she has said dd has ASD it was her attitude towards what support she thought dd should get. It was like she was still saying but let's wait and see...it's so frustrating! I'm glad it isn't her decision and just hope her report doesn't effect DDs chances of getting the placement.

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2boysnamedR · 03/12/2013 23:58

Everyone loves to wait and see, wait and see them struggle, wait and see them fail, wait and see them Rit then step in when the damage is done.

Do not let it happen.

Another mum at my sons school told me today there are kids struggling worse than my ds but no one shows any concern so they are just left.

I know you are not that parent and you will not let dd been glossed over. She needs help now, don't let anyone tell you that you do not know her best. You do

osospecial · 04/12/2013 07:25

Thanks 2boys, no I certainly won't be waiting for dd to fail before getting her the right support, if this is what the lea suggest then I will fight it all the way. Id rather take her out of school and HE than let that happen. It is sad that this happening to so many DC. The ed psyc is coming out in a couple of weeks so hopefully she be more helpfull.

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FreshWest · 04/12/2013 08:09

oso are you in south Wales by any chance? Your story sounds eerily similar to mine. Dd was referred to an O&A unit and instead of two terms was there for 10 Shock
The ed psych was off sick for months but they wouldnt pass his case load on. The dx panel was also cancelled as someone was sick, they delayed her statement, there were no places in the ASD units.
However I did have a happy outcome a few weeks ago and dd is now in an ASD unit.
Don't take wait and see approach as an acceptable answer. Your Dd needs help straight away and my favourite phrase was always "she needs to reach her full potential, whatever that may be, and needs to be in an appropriate environment to help her achieve that"
Fwiw our paed was rubbish as well. We got where we are in spite of him not thanks to him. Grrrr.

osospecial · 04/12/2013 09:11

Hi freshwest, yes we are in south wales! Smile Well south west really, is that where you are? And your story does sound very similar, glad you have a good outcome for your dd now though, its ridiculous how much hard work it is to get to that outcome isn't it?

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KOKOagainandagain · 04/12/2013 09:52

Just like to say that there are some fantastic NHS paeds and some terrible ones - I know because I met both types!

The first paed refused to accept private SALT/dev paed diagnosis of ASD.

As we live in a different county to the school, DS1 saw a different paed for SA. On the run-up to tribunal the LA, via their solicitor, tried to lean on her. DS1 had to have an extra assessment with her after which the solicitor spoke to her over the phone. She not only stood up to the solicitor but gave a stamp of NHS approval to the private diagnosis without the requirement of any more assessment, and she wrote that m/s was unsuitable.

LA still went to Tribunal and conceded on the day of the hearing.

KOKOagainandagain · 04/12/2013 09:57

I met the first one again when DS2 was referred by SALT.

Her nose was still out of joint over DS1 and she kept confusing the boys and making inaccurate and contradictory statements - snap oso. DH complained and DS2 was assigned to a different dr on the team. He is now well advanced on the ADHD/ASD diagnostic pathway and has an appointment with the consultant of the team in January.

If you have a bad one, exercise your right to see another doctor. A good doctor will have no qualms about disagreeing with a bad doctor even if they work on the same team.

FreshWest · 04/12/2013 10:41

oso Yes! Is the school where dd is now called Y F by any chance? Pm me if you don't want to answer on here.

wetaugust · 04/12/2013 10:45

If you have a bad one, exercise your right to see another doctor. A good doctor will have no qualms about disagreeing with a bad doctor even if they work on the same team@

Yes, Fresh, that was my experiene too.

FreshWest · 04/12/2013 10:50

That wasn't me wet but KeepOn but a good point nonetheless Grin

osospecial · 04/12/2013 11:42

Thanks keepon, I'm hoping we won't need to deal with the paed much after the dx and at least she is now agreeing about the dx (just wish she would hurry up+put it down on paper). Luckly I have the private paed report who was very supportive about what dd needs to help her, but I will keep that in mind and ask to see somebody else on the nhs if I have to have much more dealings with her.
Fresh-i think I know which one you mean, I visited there but dd ended up going to the R P one do you know it? Is YF where your dd went? Do you mind me asking which asd unit she is in now?

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osospecial · 04/12/2013 11:54

Good to know there are some better NHS paediatricians out there too keepon

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wetaugust · 04/12/2013 11:55

Sorry Keep. I'll try to keep up Grin

KOKOagainandagain · 04/12/2013 12:01
Grin

Good luck oso. We could really do without being hindered by those who are supposed to help. Unfortunately, you are not alone. Angry

osospecial · 04/12/2013 12:10

Thanks keep, guess I was expecting that attitude from lea but not the paed!

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FreshWest · 04/12/2013 12:26

I've sent you a pm oso Smile

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