DD16 yrs finally diagnosed ADHD . A.I.B.U to complain to her school for not referring earlier, or should i be grateful that they did?

[Quirkyones]

It was not for the want of trying to get dd diagnosed; i had a feeling since early primary but was met with brick wall , or told, 'everyone's looking for a label'. DD passed 5 G.C.S.Es at C level, so did well but I am really sad to think that maybe with added support or understanding, then she may have done better and her self esteem might not have been as low as it has been.

I am thinking of complaining , with the intention of making girls with A.d.h.d noticed earlier. I would also now like other screening done to see if she has mild autism /dyslexia as she has traits of both. Or would this become a set back for DD in sixth form?

What type of professional did you get your private diagnosis with?

my son’s was with a consultant paediatric consultant costing and eye watering £2k, but accepted by all bodies without question

I don't blame you but I don't think it'll make any difference. I've spent a decade trying to get support from my DD. Now she has finally been referred for an ASD assessment as secondary school and our early help worker think she fits the bill.
I have no polite words for the fucking pediatrician who sent me packing a decade ago and told me to parent her better.

@Ursuladevine We have a report from a consultant pediatric psychiatrist, who worked alongside an EP who conducted full psychometric testing. They also worked with a SALT to commission a full CELF -5 report to rule out speech difficulties being the cause. We also had hearing and up to date sight tests. The same EP also conducted an EP report 4 years prior and mentioned further need for ADHD testing. This was not pulled out if a hat at 13.
We were really, really thorough. It does make me quite uncomfortable how easily some kids are being given medication and that's just not something I was willing to do. We were offered a 30min appointment at Harley Street. That alongside the questionnaires is apparently enough. I just don't buy that.
Our private psychiatrist is retiring so we requested a medicine review with CAMHS so they could take over. It was like speaking to a wall.

There is so much useful advice though from lots of posters. Thank you all so much , it will be so useful and Merry Christmas.

On what grounds if you’d private assessment disregarded?

Schools cannot and do not diagnose. They can only provide evidence ( whether to the GP or the community paediatrics team or CAHMS- depending on the diagnosis route in different counties) on what they see in school. Many children, especially girls, do mask completely in school and so the " evidence " needed just isn't there. I have sent off many a referral with " Parents say that......" because I don't have anything else I can say! But when it comes to diagnostic questionnaires, we can't provide a narrative, just what is seen in schools. If experienced clinicians struggle to identify characteristics in a child, how easy do you think it is for a school?

@Ursuladevine I'm still trying to figure that out really. We waited a year to be triaged by them and the poor admin person who did our interview couldn't put me in touch with the psychiatrist. When I asked for a second opinion he said they don't have the resources for that.
When I questioned why it's not been accepted he said the psychiatrist isn't satisfied with the evidence. I asked which evidence exactly and he said he can't divulge and gave me the details of where to complain. He did also mention that they do not normally accept private diagnosis as the psychiatrist finds them not thorough enough, which I respect, but in this instance I don't think the psychiatrist even looked at the evidence. It makes me livid that we've spent well over £2k on these reports and tried really really hard to have a holistic and thorough view of it, and CAMHS has just turned around and made us look like we're trying to drug DD for a trend.

What exactly would you complain about me for?

In our area it's fairly common to not have private assessments accepted. It's really frustrating.

@cortisolqueen We may live near each other lol. I can understand all sides to it to be honest. It makes me extremely uncomfortable that a child is being medicated after a 30 min zoom assessment. Saying that, I don't know how much more thorough the CAMHS assessments are. I just know that we turned every stone before my DD took her first meds and we are extremely lucky we could do that. We are not well off, DD is in a state school and we had to use savings to pay for all our reports and the clinic allowed us to pay some off in instalments. I accept that CAMHS is over stretched but my DD would probably have attempted suicide now if we hadn't got her help when we did.
I just don't see the point in her being on that waiting list. She will likely be 18 by the time it's her turn and there will be another child who will need it much more desperately. It is very frustrating to also not have a valid reason as to why we are being turned away.

Yes, same here.

Back when we first started investigating DD’s issues, we looked at a private assessment and were going to use the same EP that the LA uses, but in a private capacity.

We were told point blank, it wouldn’t be accepted.

Pretty sure the “big fat complaint” was directed at me.

i was quivering with fear when I read that

@alloalloallo Accepted for what though? The only time the private assessments weren't accepted for us were for CAMHS. They were accepted at tribunal when we fought for an EHCP and were accepted by multiple other agencies that support DD. The tribunal actually used a foreign report as the main evidence, this report wasn't even accepted by the school.
The LA said that private reports wouldn't be accepted by them but thats BS. At tribunal it doesn't matter as long as it's a medical professional. The LA reports have never been as thorough or specific as the private ones so I understand why they don't like the private ones. If not for the private reports that specify exactly how much support DD needs on a level and hour basis, she would have nothing in place.

My friend tried that, and the GP dismissed it offhand, saying that if her son was neurodivergent, the school would have picked up on it and referred him for assessment. Her DS was eight at the time.

Within the next 2-3 years, he got much worse, was referred to CAMHS, diagnosed with significant MH problems (PTSD, GAD, depression, social anxiety disorder) and after a couple of years, CAMHS decided his mother might not be talking bollocks and that he might have ASD.

He's been waiting for his ASD assessment for nearly 3 years now. He's now 16, and she's starting to think that he'll have to start again with the adult MH service. He hasn't been to school since he was 11.

Maybe makes a difference that the private assessment my son had from a consultant paediatric psychiatrist is also and NHS one and performs NHS assessments too

If you have the bandwidth then I think there is great value in going in and discussing this because it is a HUGE problem and especially so for girls.

But complaining won’t achieve anything - you might think it would at least make you feel good but it won’t.

I feel like I spend my life advocating for ds with teachers, doctors etc because when he masks he is just amazing. Looking back, the fact that nearly all his parent teacher meetings began with gushing of “he’s absolutely wonderful” was a sign that something was astray but he was my eldest and I thought that was standard settling into the meeting talk.

I was lucky to get the diagnosis ball rolling before school was a factor because it was just not obvious at all in primary that there was an issue.

And I’ve just been incredibly lucky that the SEN coordinator in secondary is open to listening and and thinking about things a little bit differently.

But it is miles easier to breakthrough these barriers for boys. Everything we can do as parents to educate and raise awareness of how ND presents is genuinely vital work.

Between 11 and 16, if he hasn’t been attending school, what has he been doing? Has the LA been providing any education or have you been HE?

Rather your friend

The gp and the school will bat back and forth as each wants the other to deal with it. Ultimately its a medical issue and should be handle by GP/nhs route.

I sympathise, and I am sure it must be incredibly frustrating. I'm sure many private assessments are high quality, and reliable.

Just to put the other side though, in school, we can get deluged by private assessments, and have no way of evaluating their quality. The most extreme example was a year 8 girl I once had to buy a new filing cabinet for, becasue she had so many private assessments. The parents just kept on and on buying them until they got one that said what they wanted it to say. The one line that stands out to me in the literally thousands of pages I had on this girl was " is suffering from an excess of time spent in assessments"

It was your GP who let you down by not referring, the reasoning of school needing to raise an issue, is utter nonsense.

My DS has been referred for assessment for ASD by the school. It was only by combining what we were seeing at home with what the school were seeing that the referral was made. I don't think we'd have got anywhere with the GP at that point.

They also got the camhs referral made by the GP re-triaged after it was initially refused and got the ND Pathway referral sped up so we don't have to wait over two years - this is because of how things have escalated, but the help and support of the school has been invaluable and I think we'd have struggled to get this far through the GP, as just seeing a GP is a struggle while we've had regular meetings with the school, been in pretty much daily contact with them.

He's not my son, but the son of a friend.

The LA were doing precious little, apart from insisting that friend had to get him to school, resulting in massive meltdowns every time she tried. He now attends a teaching centre, he's supposed to go twice a week, but more often than not he goes once or not at all. Friend was a teacher, so has been doing some HE.

It's so sad, he's a lovely young man and very bright. The system has really failed him.

@Ursuladevine Our psychiatrist is also an NHS one. The vast vast majority of consultants who are doing private work, work for the NHS too.

@Oblomov22 I'm not sure that's entirely correct. When things first became a worry with DD, we approached out GP with issues first. He was very understanding and did all the referring he could. Camhs actually rejected it and said it needs to come from school. Same with the speech and lang services. Once school referred, speech and Lang said they don't see kids above 7, you need an EHCP. LA said not enough evidence for EHCP. So we got private reports and tribunals aplenty.
It's really mind boggling and often a mystery what processes are used where, even within one borough people often have very different experiences.