My dd may have inattentive ADHD but the wait for an assessment could be up to 2 years!

[Septemberintherain]

My 14 year old dd has struggled a lot with her learning.
I have had many meetings with various teachers and they all concur that she doesn’t seem to concentrate at all in class, she appears to struggle to retain the information and often seems in a dream. She is like this at home.
Primary school said it was because she had no confidence and did little to help her.
It wasn’t until around 6 months ago when she sent me a Tik Tok about a girl with ADHD and tagged ‘Mum, this is just like me!’, that we realised she could indeed be neurodiverse? The more I starting looking into it, the more she ticks all of the boxes for inattentive ADHD (as do I but that’s another story all together!).
She does appear in a dream at times yet talks so fast that we have to tell her to slow down as we literally can not understand what she says. She really doesn’t appear to grasp info and keep it locked in.
So, around 6 months ago, with confirmation statements from a few of her teachers, I took her to see the GP who agreed to refer dd for an assessment.
I know NHS waiting times are long but I hadn’t heard anything so have just rang the hospital to ask how long the waiting list to be told it’s at least 2 years!
Dd will have left school by then.
I really don’t know what to do. I don’t have the money for a private assessment.
I spoke to the SENCO at her school and she said without a formal diagnosis they can do little to help her.
I feel so upset that dd is struggling so much and there appears to be little the school can do to help.
Has anyone else been in this position?

That’s normal,
my son waited 3 years for an asd assessment.
my daughter is currently waiting for an adhd assessment (already diagnosed asd) and her senco said the wait for adhd is usually quicker but haven’t heard anything been nearly a year

Same boat op. Without a diagnosis they most certainly can help!! And must!! Fill in the forms. They do a pre assessment - this picked up immediately that ds 14 has issues school must address ASAP. His initial triage panel said not enough information given so we have to resubmit forms. BUT at least school have been told by Authority they must do more for ds than punish him! It isn't a waste of time ime. I will say put soooo much info on those forms op!! Add on attached bits of paper if need be!

I would go back to school and point out support is needs lead and not diagnosis lead and the absolutley can support her needs without a diagnosis.

They should be able to access and educational psychologist who can assess her and make recommendations.

If they cant, they should be able to research teqhniques to support inattentuve adhd and just try them out on a 'plan, do, review' basis. Eg if she forgets instructions on the board they could give her a written list of steps chunked down to put on her desk next to her, then after 4 weeks review if it helped.

I went straight to private and it wasn't as expensive as you think. I think i paid £200 for my son's assessment as he was 15 and like you couldn't wait as GCSEs were looming. We live near Leicester and went to the Nuffield Hospital there. The first couple of times i paid for the medication and after that they transferred us back to the NHS and i could pick it up at the local surgery.

Assessment waiting lists are rediculous.

but the SENCO is also wrong, they can help her find techniques which work for her without having a diagnosis. It may be some trial and error to find what helps but they should be able to.

Interestingly, the consultant asked my son, "Which one of your parents was in trouble at school?" and he turned to me and said "Mum!" The consultant informally diagnosed me at the same time and so many things in my life makes sense now!

Unfortunately a 2 year waiting list is about average in most parts of the UK which really is shocking. I was convinced DS had inattentive ADHD as he ticked so many of the boxes. One of his primary teachers described going right up to him and repeatedly saying his name to get his attention but he was in such a dream like state that he just couldn't hear her. She was also the SENCO and suggested there may be some ND. We didn't get very far with CAMHS but at the end of year 7 when DS had fallen apart, he was actually diagnosed with dyspraxia (and sensory processing disorder) privately.

There is a huge overlap between dyspraxia and inattentive ADHD so it might be worth reading up on both. DS struggles with concentration, planning, organisation, his short term memory etc. Until he was diagnosed I could never understand how I could send him upstairs to get ready for school and I'd come upstairs 10 minutes later to find him lying on the floor naked apart from one sock, completely oblivious to what he was supposed to be doing!

DS's diagnosis really helped him understand why he was 'different' and gave us strategies in how to deal with and support him. However his school supported him and put lots of things in place for the whole year before he had his diagnosis so your school do not need to wait for it. I'd ask for a meeting with the SENCO and ask what they can put in place.

It may still be unaffordable for you but do research how much a private assessment is. Ours was £600 5 years ago which whilst not cheap, wasn't as expensive as I thought it would be.

The help from school should be based on needs not diagnosis. My DS received help many years ago before his diagnosis and when the diagnosis came the help didn’t really change as it was already needs based.
If you think your DD needs medication then it’s worth pursuing a private assessment..

Thanks everyone. I have emailed the school and asked to speak with them, I would have hoped they could help dd a little more especially as she is now heading towards her GCSE years.
They sent me an email yesterday saying that she wasn’t paying attention or engaging and she will be put onto an attitude to learning placement for two weeks. They are fully aware of her struggles and have done little to nothing to help, this seems a little harsh. How is an attitude to learning placement going to help a pupil who is struggling to hold onto anything she has been told?TattiePants that sounds so very much like dd, I will need to look into this.
Sadly, I just can not afford a private assessment even £200, so we are in the hands of the NHS and the school right now.

@Septemberintherain the SENCO should have experience with similar children so should be able to suggest ways to support her. For DS, simple things like sitting him towards the front centre of the classroom made a difference (by the window or a door is too distracting, sitting at the back of the class means he gets distracted by being able to see what everyone else is doing). He was also given a mentor and a pass out - if he ever felt overwhelmed he just showed his card to a teacher without explaining himself and could go and find his mentor.

We also learnt to parent differently. There's no point saying go and get dressed, brush your teeth and wash your face as he couldn't process anything beyond the first task. Being super organised and giving simple, short and clear instructions saved lots of frustrations in our house.

SE

i will be paying £1850 for my child’s

Sorry OP it is so shit. No way should kids be left 2 years FFS how does that help them?

The real big benefit to a diagnosis is medication - in the meantime I would recommend the following.

For you: Watch the videos on youtube called "Russell Barkley 30 essential ideas for parents to know about ADHD" (something like that) - actually, you could watch this with her together, although it can be a bit overwhelming.

Read and/or otherwise access the resources on Lives in the Balance by Ross Greene. Raising Human Beings or Lost At School are probably your two most fitting ones (read one or the other) and the facebook group The B Team. If you can get your head around the Collaborative Problem Solving process, it will enable you to get support put in place for her without any specific diagnosis.

For her: Get her the book "You mean I'm not lazy, stupid or crazy?" It's a brilliant primer and very accessible and jokey.

Also, I have been working through Thriving With ADHD Workbook for Teens (Allison Tyler) with DS1, who doesn't take medication at the moment. I scrutinised every workbook on the market and this seemed like the best one. It's helpful as it's a kind of step by step and helps with coping/management strategies, it is American, but there aren't that many differences except for driving earlier (we will just skip those pages) and the school system is a bit different, but I think it still applies. We read it together which allows us to bring up discussion points that we can then research - I am a few years ahead as got my diagnosis first, but if she's already using TikTok for research then it might be you can look together. These will also give you some pointers, as his doctor (we're not in the UK) suggested to make a note of when a strategy isn't working, as it can be that medication helps the strategies to work. Of course it will be out of date in 2 years' time but it will be a record of things that you have tried and how they went.

If she likes TikTok, I would encourage her to look for the How To ADHD community. It's a similar accessible, lively format to Tiktok but it's really well researched and evidenced - there is a LOT of rubbish about ADHD on tiktok, so warn her that it's fine for a supportive community/funny memes etc but if she wants serious information, there are better places to go.

Overall - it might be that you shift your focus a little bit. Rather than worrying about whether she gets perfect GCSEs or is reaching "normal" milestones in terms of independence in study, do whatever you need to do to get her through the next 2 years mental health intact, and keep in mind that anything long term can be re-done. It's not the end of the world if she gets poor GCSE results. There might be a longer, slower route to do what she wants to do in life if the "standard" route is too stressful or too difficult.

The demand for ADHD assessments has gone through the roof. ADHD assessments used to make up about 3-4% of my out patient load, now it's more like 50% (and the other demands haven't decreased so we're just expected to fit everyone in).

I'm getting requests for 70 and 80 year olds for diagnosis, although it won't make a difference in terms of management as we're not going to be prescribing amphetamines to octogenarians.

Personally, I hate doing ADHD clinics, people are so so rude and abusive if they don't get the answer they want.

Our waiting list is currently about 5 years, but we're a university town so that ups the numbers a bit.

If pay to get her seen privately if you can afford it. Ask the consultant who you are due to see on the nhs if she does private appointments. Could you save up £200?

The Senco is talking nonsense. No formal diagnosis is required. Get her to put into place the support dd needs. Email so you have a paper trail.

Borrow the money/take out a loan/ sell stuff your DD is very likely to really underperform in her GCSEs without medication.

That's not entirely true.
I have inattentive ADD and don't take meds. They're not suitable for every child.

Have a look at whether you can access a private provider via 'the right to choose' - there will still be a wait but it's unlikely to be 2 years

adhduk.co.uk/right-to-choose/

My understanding (for an adult diagnosis anyway) is that even if you get a private diagnosis unless it is from a specific provider which is recognised by the NHS you then end up needing to g et any medication on a private prescription which is even more expense. So the only benefit of saving up for a private diagnosis which you can't afford would be for help at school. If it would be a struggle to get the £200 (which seems very cheap for a private diagnosis) it wouldn't then lead to free medication on NHS (unless it is different for children).

My DD is 13 and has been on the waiting list for the same thing for over 4 years, I hold no hope in her ever having an assessment, at least not before she leaves school.
She struggles with her learning but her behaviour is very manageable, she's on the SEN register at school but aside from the odd one to one session with a TA then that's been pretty pointless.
A private diagnosis holds no weight in a state school so don't see the point in paying for one.

I think inattentive ADHD is far more common in schools than figures show, especially amongst girls.
My advice would be to read up on it at home and find techniques for her that might help then liaise with the school senco on what can be done in school without a formal NHS diagnosis.

Right to choose is only available for 18+.

I'd definitely sell some things, cut back, whatever it takes tbh, to get an assessment, OP. If your DD is in Y10 and getting into trouble, you need to prioritise getting her the support she needs.

DD is 17 and her college suggested we get her assessed for ADHD.
Her GP didn’t want to know and the only NHS provision won’t even add her to the waiting list at the moment- but when they do it will take 2 years minimum for an appointment.
Luckily we can pay but even so it took time for someone in the area who can offer her an appointment within 6 months. The initial assessment is £500 and then a further £3000 for a full one

It is NOT £200 to get a private assessment for ADHD

it is NOT. Please disregard what the Pp “thinks” she paid

@Razzle5
If you were referring to me, I never said the word diagnosis. Nor assessment. I just said appointment. You can get an appointment for £200+.

Good job I wasn’t referring to you then

BigusBumus1 · Today 10:46
I went straight to private and it wasn't as expensive as you think. I think i paid £200 for my son's assessment

The cheapest assessment I’ve found, in our area, was £650 but they are now closed for new applications. Most fees that I’ve been quoted are between £800-£2000!
I am on carers allowance, I simply can not afford those figures.
I suppose my main issue right now is trying to get the school to help support dd.
I don’t think the senco was being particularly helpful stating they can not help dd unless she has an official diagnosis!
I would have hoped they would be helping all struggling pupils, regardless of diagnosed conditions.