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Secondary education

Connect with other parents whose children are starting secondary school on this forum.

Private ADHD referral - School & Trust won't complete forms

80 replies

Fluffycloudsfloatinginthesky · 27/02/2025 11:25

Anyone been through this. School agree referral to Cahms is warranted however completely refuse to complete forms for a private assessment - it's also trust policy.

I think I need to get SEN lawyer involved but anyone been through this scenario and got any advice.

Basis for this is that they cannot guarantee their qualifications.

Apparently it doesn't matter if CAMHS will accept their diagnosis . It also doesn't matter that they are actually the lead for local NHS trust most of the week, if the forms come on a private day they won't be completed.

They have apparently never had anyone go private in the entire trust and if they fill the forms for me they have to do for anyone else and they cannot be sure they would guarantee the credibility of the provider.

I have already done a private mental health assessment for which they wrote a letter and in that assessment her scoring was above the adhd thresholds (also dad has it)

OP posts:
Wishyouwerehere50 · 01/03/2025 11:46

hotfirelog · 28/02/2025 22:56

@Warmautumnbreeze that's a nightmare for parents. I'd really like my DD to not have to take meds. But she does. Her choice. She is much more focused on them but still all over the place at times. It's a 3 year wait for nhs here. Referred at end year 7 .. she's in year 10 and still waiting

Sorry to derail - does it impact her mood? We have struggles with emotional regulation. I don't want to make that worse.

OhCrumbsWhereNow · 01/03/2025 13:33

Wishyouwerehere50 · 01/03/2025 11:46

Sorry to derail - does it impact her mood? We have struggles with emotional regulation. I don't want to make that worse.

For us, it has had a really good impact on mood.

DD (15) is more rational, less inclined to catastrophise and generally calmer and nicer on them.

The only issues are when we have been titrating the dose. Every time she starts a higher dose, or after a long holiday when she hasn't been taking them, there's a few weeks where she is frankly vile for 1-2 hours after the meds wear off. Simultaneously exhausted, hyper, starving and looks to pick fights with me. It gradually stops over about 3 weeks but I have to remind myself every time to just ignore her for those hours and make sure the house is stocked with snacks.

I've also found that I need to remind her to take her meds - challenges with executive function don't help!

OhCrumbsWhereNow · 01/03/2025 14:52

Just to add, if anyone is thinking of starting meds, I really recommend getting Peter Hill's 'Parents Guide to ADHD Medication' and reading it BEFORE any assessments.

It's about the most useful ADHD book I've read, and it meant I didn't need to waste time in the appointment asking loads of questions as I already knew the answers and and could use the time for more DD specific stuff.

It covers all the different options and why some brands are better than others for UK, how the XR versions work compared with IR etc.

hotfirelog · 01/03/2025 20:38

Also recommend the book highly

LegallyBlende · 01/03/2025 23:03

DD (15) is more rational, less inclined to catastrophise and generally calmer and nicer on them

This is my dd too. She feels happier in herself too.

Fluffycloudsfloatinginthesky · 02/03/2025 07:15

Thanks everyone for the additional comments. Someone IRL also mentioned using the CAMHS forms for a private assessment. I didn't know that was possible and sounds like it might be a good route.

I have also been given a book on meds by a colleague whose 2 kids have ADHD. It's not the one mentioned but it's a starting point.

Regardless of what happens with CAMHS forms though I am hoping the school change their stance - given NHS waiting lists it will surely become more common and what's important is that everyone's kids get the help they need.

OP posts:
Phineyj · 02/03/2025 08:09

Yes, their stance is not tenable with the NHS using private providers extensively and LAs too.

Our OT assessment for EHCP was contracted out (by the LA) to a private provider.

Our ASD and ADHD assessments were done privately (by moonlighting NHS medics) in 2020 - the NHS providers were actually shut. All year. What's a parent to do?!

Bonsaibaby · 02/03/2025 08:13

Can’t they do it without school input? Private adults wouldn’t have this.

Shintoland · 03/03/2025 11:27

Bonsaibaby · 02/03/2025 08:13

Can’t they do it without school input? Private adults wouldn’t have this.

I believe that is the big difference between adult and child assessments. Worth OP checking the NICE guidelines to see if school input is a requirement, if she hasn't already - but I suspect she has and it is.

OP we had an issue with an autism assessment that school obstructed albeit in a different way. The assessing psychologist went into school to observe him, and gathered "school" data that way. I think she also managed to talk in person with his previous teacher. This might be a "third way" that would sidestep the ban on filling in forms.

School's reasons are obviously hogwash. Teachers are being asked for their professional observations as teachers, they are not being asked to diagnose. Possibly the volume of extra paperwork for staff is an issue, especially given recent strike action.

In our county NHS assessments are subcontracted out to private suppliers these days so the lines are completely blurred. We are paying for exactly the same assessment (for our other child) that DC's friend got for free on the NHS.

Fluffycloudsfloatinginthesky · 08/03/2025 10:16

Just an update:

The school have now agreed that the policy needs updating. It won't be a blanket agreement to fill in any private form but they are apparently working with CAMHS to develop a quality assurance process so they can ensure they are credible.

Given the person I am using is ex CAMHS herself then all should be fine.

I think it is the right decision by the school and luckily only took the one escalation to the head to get to the right place.

OP posts:
Shintoland · 08/03/2025 10:21

brilliant news, well done OP!

Phineyj · 08/03/2025 10:21

Well that's good news!

Oblomov25 · 08/03/2025 10:22

What have you actually achieved though op? Have they filled out the form yet? Have you written an email to Head, Senco, quoting the Send code, threatening a formal complaint to the board of governors. You need to know how to play the game, put everything in writing so there's a paper trail. You need to toughen up and be more proactive.

Fluffycloudsfloatinginthesky · 08/03/2025 10:35

@Oblomov25

This is all in writing. The letter I sent went to the head, trust and board of governors, decision has come back via email not verbally.

Having read the full letter they have sent me I am comfortable that this is / will happen. They have been very clear in their logic for what they did before / are doing now.

They have always been very supportive in the past and other people I know had a good experience with Sen support which is why I found their stance on this at odds with my experience to date of them.

I will obviously keep on top of it to make sure it's not dragged out for 6 months but I don't see any benefit yet of not taking them at their word.

They have confirmed the CAMHS referral (which I am having done anyway)will go in next week so as advised by pp on here I have checked with the private clinician that she will accept those questionnaires if they are done before the school finalise the process. I think she said to me they take about 4/5 weeks to get those out. It's the wait after that is the long part.

OP posts:
Wishyouwerehere50 · 08/03/2025 11:33

Oblomov25 · 08/03/2025 10:22

What have you actually achieved though op? Have they filled out the form yet? Have you written an email to Head, Senco, quoting the Send code, threatening a formal complaint to the board of governors. You need to know how to play the game, put everything in writing so there's a paper trail. You need to toughen up and be more proactive.

Agreee @Oblomov25, they're so slippery and you obviously have been through this too 🙏.

Schools aren't on your side OP. They don't care, about you, your child, they give zero shits. They care ONLY about resources, reputation. That is all.

You've done great there so far. You have made them agree to something. But it requires going next level. If not now then shortly.

They are probably going to drag their heels here. They WILL leave out vital information about your child. This is a promise I make to you. How much it impacts her I don't know. It depends how big her struggles are compared to peers managing this in school.

Another poster here talked about an in school observation. When I went private and paid, the assessor suggested it because she knew it would show things no teacher will EVER tell you. That will be the same for you. That information gathered by an observation is helpful for 2 things:

  1. It completes the picture regarding the behaviour and impact in school that further corroborates the suspicion SHE'S ADHD (maybe more) and thus supports the diagnosis process.
  1. After diagnosis, you want clear concise clarity regards what the need in school is and how that can be helped. The school won't tell you that,their questionnaires won't. An observation by a professional you pay for, on your side, they'll show you and school everything she's struggling with ( if she is not aware and not masking, that helps for seeing things in the observation).

An education psychologist can also clearly assess her learning needs after diagnosis so that's a road to go down if you get the diagnosis sorted.

And don't let school find their own. If you can pay, YOU find the Ed Psychologist who works for YOU. They won't lie. School will. No I'm not paranoid, I've seen so much now, it's what is really happening across every school ATM.

During my child's own assessment observation, the assessor I paid for and sourced knew who to go talk to ( in the playground) what to ask,how to get info from them and what she saw.

Her report showed a child with a significant and I mean bloody significant amount of needs, socially, with peers,with focus, with staying still, with interaction with classmates with teachers,revealed tourettes tics I didn't even know he had!! I had no idea how much he was struggling.

And guess what, the school had been telling me for months ' all ok here, no problem '. They all do this. Your school will definitely do this. They might be nicely nicely the last week or so, don't be fooled.

I'd do whatever it takes to get an in school observation from YOUR professional,not theirs or whoever is on their books, but who is loyal to you and highly qualified and skilled. She's going to get the diagnosis I'm sure ( however long they drag it), but after that you will be left floundering. School will do nothing post diagnosis,I repeat NOTHING.

So then you're going to be looking at making them confirm how they will actually support her in school, now diagnosed, and what accomodation she will have for important exams that will be much harder for her compared to peers.

Don't let those arseholes whitewash you with platitudes. My senses are telling me that's what they're doing.

This sort of language I will write in a moment will help you get what you want. I'm writing an example of the sort of emails and language I now use and how magically school started falling over themselves to support after this style of Comms. Note, the absolute essential importance of the words disability and equality legislation.

Any lawyer will tell you what I am giving you here.

This below is my gift to you if you want it or want to take parts from it. ❤️

' Dear gaslighting twats ( obviously don't say that😆)

Thankyou for your continuing support in the assessment process for my daughter ( name); highly suspected ADHD/ASD.

As discussed, her learning needs, which I believe are based in disability and subject to Equality Act legislation, require assessment and appropriate accommodation in school so that she is able to achieve her full potential in the learning environment on a par with her non disabled peers.

I am grateful to have your full support in providing as much information as possible regarding my daughter's learning support needs to CAMHS as part of the ADHD/ASD assessment process.

I would really value confirmation with regards to how this process of assessment is progressing and will make contact regarding that within 4 weeks if I don't hear any more before then from you or CAMHS directly.

At some point, it will be beneficial to discuss how my daughter's learning support needs can and will be accomodated in school. I have sought legal advice regarding the feasibility of an IEP and how I can work together with school to ensure this process is applied post assessment for ADHD/ASD.

Once the ADHD/ASD assessment process is complete, we can discuss the specifics of something like an IEP and whether something like Educational Psychology involvement is needed to further establish needs in the learning environment and appropriate support in school according to the 4 SEN strands.

Thankyou again for your ongoing support in this process.

Kind regards ( stick that in your pipe you robbing arseholes, earn your money that I pay you for my child's education, peace out)

Mum

This probably feels too heavy,too much. But when the wheels fall off, ( they usually do), maybe this will help you. If not other mums reading this 🙏.

Shintoland · 08/03/2025 12:27

How is it helpful to berate OP for not being proactive enough or tell her to toughen up? She's clearly working hard on this, is well informed and it's only a week since she first posted. She doesn't need both barrels from us.

@Fluffycloudsfloatinginthesky this thing about quality of their inputs still sounds like an excuse to me but either they'll fill the form in or they won't. It just needs to have enough on it to reach the threshold, and it sounds like they've already given that much really from the letter you already have.

Oblomov25 · 08/03/2025 12:30

I agree with Wishy.

That's your choice to trust them! I wouldn't. I'd be sending another email asking them to also guarantee that not only will camhs form be done by close of play this Friday xth March, but also the private forms also done by Friday aswell. Stating that the private ones were submitted to them on xth and that they've already had them for x weeks.

You need to give facts and figures, quote send code, rules, regulations and shame them asking if they're deliberately blocking diagnosis.

Oblomov25 · 08/03/2025 12:32

@Shintoland
It's not berating. It's advising her to be more proactive and savvy. Experienced sn posters know was tricks school play.

Oblomov25 · 08/03/2025 12:34

You can also ask Senco now for dd's name to put on the list for the educational psychologist. The waiting times are long and you might need one to review dd post diagnosis.

Wishyouwerehere50 · 08/03/2025 12:38

@Shintoland no one here is attacking OP at all. Quite the opposite.

She has done great. See my reference to that above. Handling this stuff takes courage.

Would OP or all the mums reading this prefer emoji's including flowers, congratulatory sparkler emojis, clap hands emoji?

Maybe. Maybe, at some point, OP and hundreds more reading this will really value seeing what may be achieved if you communicated a particular way when the battle re ignites with school. And it will.

If OP isn't ready for this stage of the game ( some of us are expert players and further along), that's ok. This is such an exhausting process and takes alot to understand the rules and dynamics of this game.

Our words will ring true when she's ready. Not today,maybe not for weeks. Some point,they will.

And she can come back and use what she wishes from what the more experienced game players have gifted her.

Wishyouwerehere50 · 08/03/2025 12:41

Oblomov25 · 08/03/2025 12:30

I agree with Wishy.

That's your choice to trust them! I wouldn't. I'd be sending another email asking them to also guarantee that not only will camhs form be done by close of play this Friday xth March, but also the private forms also done by Friday aswell. Stating that the private ones were submitted to them on xth and that they've already had them for x weeks.

You need to give facts and figures, quote send code, rules, regulations and shame them asking if they're deliberately blocking diagnosis.

You are clearly a high level, advanced player in this game too 😆.

OP you really are doing great. This stuff is psychological warfare.

It takes time but you'll become an advanced player when they push you to it. You can do this 😘

Fluffycloudsfloatinginthesky · 08/03/2025 12:50

I'm taking in all the comments

The reason I am willing to give them some time is generally they are good.

She has interventions galore and has a really good relationship with those in the support hub.
She has extra time and a separate room for exams
She has pass to go to the MH hub, Sencos office etc when she needs to
She has external counselling start there last month - she refused to go after two sessions but that's another story.
A teacher at parents evening mentioned they had a crib sheet or similar so used that in knowing how to handle her.
Her form tutor has offered to sit with her every week to support her maths homework.

So she is getting support. It's just this one sticking point.

OP posts:
Fluffycloudsfloatinginthesky · 08/03/2025 12:52

Thanks for the Ed Physc tips - I will look into that.

OP posts:
Wishyouwerehere50 · 08/03/2025 12:55

@Fluffycloudsfloatinginthesky that's quite something support wise from them at this stage compared to most schools.

It's strange in it's contradictory behaviour to the assessment process.

I think other mums with struggles here will read all this and know they aren't insane. A great conversation to have out loud and great advice.

Fluffycloudsfloatinginthesky · 08/03/2025 13:26

@Wishyouwerehere50

I know that's why it confuses me to much. They keep saying diagnosis doesn't matter they support on symptoms but that doesn't help if actually she needs meds.

OP posts: