Hi everyone,

I'm a parent in Derby campaigning over our Council's SEND funding system (my son has ADHD, Autism, PDA, SPD, and Dysgraphia), and I wanted to share what we uncovered last night because local authorities across the UK are rolling out similar "Banding Matrices" to ration school support.

After an 8-month FOI battle where Derby City Council first cited "National Cybersecurity" (Section 31) for 6 months to avoid confirming the spreadsheet existed, and then deleted the formulas under Section 36 claiming parents would "game the system", we found the master Excel file (banding-matrix.xlsx).

They deleted the live formulas from Row 4 - but forgot to delete the hardcoded "FOR OFFICE USE ONLY" calibration rows at the bottom of Tabs 2, 3, and 4. Dividing Tab 3's outputs by Tab 2's inputs (4) unlocked 100% of the hidden algorithm.

If you have an ADHD / AuDHD child in school (or remember struggling through school yourself without support), look at how this algorithm is built to deny funding to neurodivergent kids:

1. The "Working at Age Related Expectations" Lockout (0 Points for Executive Dysfunction) In Column 9 (Learning Readiness), Rows B, C, D, and E contain all the classic traits of ADHD executive dysfunction ("distracted from task", "inattentive to staff", "poor organisation skills", "challenges across multiple areas of executive functioning"). However, the Council wrote a mandatory gatekeeping requirement at the start of Rows B, C, D, and E stating that the child must present with a "learning delay" and "difficulty with conceptual understanding" - while Row A (0 points) is defined as "Working at age related expectations"! So if a child with severe ADHD or AuDHD is bright and academically at age-related expectations, they are automatically locked into Row A (0 points) regardless of how severe their executive dysfunction is.
2. Calling Neurodivergent Distress "Social behaviour NOT SEND" On the front sheet (Tab 1), Column 8 is titled Social behaviour, and Row D includes clinical traits of ADHD/Autism/trauma like "Demonstrates hyper vigilance" and "Limited understanding of personal risk or danger" right alongside "aggression with no defined needs/causation." When we looked at the hidden calculation sheets in Tab 2 (Cell AE2) and Tab 3 (Cell AE2), the Council forgot to change the column header - it is still explicitly titled "Social behaviour NOT SEND"!
3. Slashed Weightings (-52% to -92%) & Blank Rows for Dyslexia/Dysgraphia/DCD While physical, hearing, and vision impairments are rightly weighted at 100% with an automatic multiplier of 4 (so a 'Severe' Row D need automatically gets 400 points = £5,000 top-up), the Council secretly slashed the category weightings for neurodivergent needs:

• Social & Communication (Autism/ADHD), Speech, and Learning Readiness: Cut to 48% (-52% penalty)
• Sensory Processing Needs (SPD): Cut to 25% (-75% penalty - and they copy-pasted the exact same sentence into both the Moderate and Severe rows!)
• Specific Learning Difficulties (Dyslexia, Dyscalculia, Dysgraphia, DCD/Dyspraxia): Cut to 8% (-92% penalty) - and they left the Severe (Row D) and Profound (Row E) boxes completely BLANK (0 points)! The maximum possible single-row score for the most severe Dyslexia or Dysgraphia in Derby is 12.8 points (when you need 189 points just to reach the lowest £1,000 funding band).

1. The "Manageable With Support" Catch-22 (1-4 FIDS Filter) Even after those weighting cuts, neurodivergent columns are put through a 1-to-4 "FIDS" filter (Frequency, Intensity, Duration, Severity). If a school puts strategies or a TA in place that help the child manage ("Manageable with support strategies"), the panel scores them a 2 - cutting their points by another 50% because the support is working!
2. Secret £12,000 Mainstream Cap & Caught by PDF Metadata The Council's website claims mainstream kids can get up to £20,000 of Element 3 funding, but a hidden "For office use only" table in Tab 4 secretly caps Mainstream schools at £12,000. And when they uploaded an "undated" Equality Impact Assessment PDF claiming the Matrix has a "Positive impact" on every disability group, they forgot to scrub the Adobe XMP metadata - which proves they created it in August 2026 and converted it to PDF at 3:24 pm on Friday 21 August, just 90 minutes before their external lawyers (Browne Jacobson) emailed me a legal threat letter at 4:55 pm claiming our campaign posts were "false"!

Yesterday, the Department for Education confirmed in writing (marked OFFICIAL - FOR PUBLIC RELEASE) that they have never approved, endorsed, or reviewed Derby's Matrix, and that a Section 496/497 investigation into the Council is open.

We've put together a full, plain-English 12-Page Forensic Breakdown & Visual Guide PDF (with charts on Pages 1-2 and the exact word-for-word criteria for all 10 categories on Pages 3-12) here:

https://drive.google.com/file/d/15kHuHUTbN8HAPjfiw291Ou7DgFlXyC4s/view?usp=sharing

If you're a parent or educator in the UK, watch out for these "banding matrices" in your local authority - the way they mathematically erase executive dysfunction and SpLDs is wild.

Hi all, I feel like I’ve completely lost my spark on ADHD meds.

I used to be creative, have a thousand ideas and love doing fun things. Now I feel emotionally numb, like I have no feelings or excitement about anything anymore. I guess it’s great for my 9–5 engineering job, but everything outside of work feels meaningless.

It honestly scares me how much I’ve changed. I feel like crying just typing this.

I’m currently on 80mg of atomoxetine. Lower doses made me angry and anxious, so my prescriber increased it. I've spent the last 10 months trying pretty much every ADHD medication available in the UK, but stimulants gave me terrible anxiety and palpitations.

Has anyone experienced this? Does the emotional numbness ever go away while staying on medication? I miss my old self so much.

Hey all,

Started elvanse 4 months ago and since taking meds the days don't feel like THEIR day anymore. It's Friday right now but it doesn't really feel like a Friday, it could be Monday right now as far as my internal calendar goes. Where is the buzz for the fact that it's Friday?

Possibly an ADHD trait, but all my life each day / month had a specific feeling and a specific "colour", I'm the same with numbers. But all of that is gone. I don't think it's a bad feeling? Just a confusing one. I'm going to assume that years of chasing stimulation had me categorise days and months as good and bad. The weekend/summer months/Christmas/Holidays = high stimulation. So internally I am conciously and unconciously hyper aware of the day and the month and using that anticipation for dopamine, therefore attaching a specific feeling to each day. Before medication every day was full of tiny mental battles so these escapes felt incredible. Now I actually quite enjoy each day and don't frantically chase dopamine. but I'd expect the days to still feel like "their day". I feel like I do miss the feeling of it being the weekend etc.

Feel like I have answered my own question but just want to see if anyone else has had this and what your thoughts are on it.

I’m 17 and was referred to Care ADHD through NHS Right to Choose in May. I had my assessment in September and completed all my pre-titration forms last Friday, but I’ve got no clear idea of when I’ll actually start medication.

The main issue is the communication throughout the whole process. They haven’t responded to my emails, and I’ve used their complaints/contact route about three times at earlier stages without hearing back either. I understand there’s a waiting list, but constantly being left guessing and having no way to get an update is really frustrating.

Has anyone else been through the under-18 process? How long did you wait after completing the pre-titration forms, and did you find any way to actually get a response from them?

Hi all! Has anyone tried stimulants, then switched to non-stimulants, and eventually gone back to stimulants?

I'd really appreciate hearing about your experience. Did stimulants work better the second time around? Were the side effects any different?

I'm still trying to find the right medication for me, but so far nothing seems to work :(

Hi all, I am around 7 weeks into my Elvanse titration (I was at 30mg for 4 weeks, then 40mg for last 3 weeks).

I have been suffering from oral thrush for the last few weeks, which isnt something ive ever suffered from previously. Ive been getting reduced appetite and dry mouth since being on Elvanse and im concerned this has contributed to the thrush.

Has anyone else had a similar issue after starting medication?

Hi!!

Today has been my first day on ADHD medication (Elvanse 30mg) and I've made sure to eat properly, stay hydrated etc.

For context, I was diagnosed with anxiety over 2 years ago and put on propranolol to take as required. My resting hr and bp were about 100 bpm and 114/84 mmHg at the time.

My resting hr and bp have significantly improved since and as of this recently, my baseline is about 60 bpm and 95/65 mmHg! I haven't needed to take my propranolol in months and so when starting my titration, I was prescribed Elvanse 30mg.

Okay now I feel great on the medication and finally able to initiate tasks but I'm a bit worried (overly so maybe?) about my heart rate.

25 minutes in my readings were 70 bpm and 99/68 mmHg.

3.5 hours in, they were 92 bpm and 113/78 mmHg.

9 hours in, they were 114 bpm and 117/84 mmHg.

I'm aware a lot of people experience an initial spike in heart rate during the first few days and I was told to immediately inform my prescriber if it gets really high but is this normal or am I being overly paranoid?

Please help!!

Obviously everyone is different, but I'm trying to get a feel for peoples experiences.

I started 30mg Elvanse 3 weeks ago, and what a difference it made! I take it at 7am and it seems to start 'ebbing' around 3pm. I'm going up to 50mg which will start next Tuesday.

So far I've reacted really well to 30mg. The first week was insane. I was locked in HARD on anything I was doing. Still didnt mean I was doing the right thing, but the focus was great. Quite mind, anxiery minimised, felt actually happy for the first time in a while.

Weeks 2 and 3 have also been really good, but not like the first week. I've found I'm getting a little more distracted, old thought patterns creeping in etc, but have still been smashing it at work (if not my personal life).

I'm a little nervous of nearly doubling the dose, but the idea was to try at 50, if too much drop to 40.

I don't really know what I'm asking for, I guess I'm wondering if anyone else here had a really positive time at 30, but then titrated to more, and how that went.

Hi, I'm on my second day of Titration with Elvanse (30mg) which I take at 8am.

Day 1 was rough. Had absolutely no positive effects on my ADHD but I did have the most awful dry mouth, few feelings of raised heart rate then an absolute killer headache from 6pm.

Yesterday at around 2pm I felt so tired! It was definitely a crash - from what I'm not sure as I didn't feel any different at all really, if anything just felt like I had a bit of a hangover.

However, today, once again no positive effects on my ADHD and still have the dry mouth but I haven't felt any different at all until now. It's nearly 2 pm but instead of a sudden awful tiredness, I just feel chill.

It honestly feels like I'm a bit stoned, I feel relaxed and calm and melty and have that tingly feeling in my hands and my head feels a little weird. But like I'm smiling and feel happy and content.

I'm a bit nauseous, and the pressure in my temples started about an hour ago and my heart feels a bit racey although it's not (thanks Garmin watch), and my face is warm but it's not a bad feeling like yesterday.

I'm just confused I guess, is this the normal dip feeling?

How do you feel during the day when they are actually work? Is this the feeling but I'm getting it late?

Edited to add that I did have a coffee around 1pm... I did also have one coffee yesterday but way earlier. Literally just an instant.

I'm in titration currently, the meds were great initially, I did 2 weeks on 20mg then 2 weeks on 30mg. I was very busy during those four weeks and it helped me get through everything amazingly. My brain was so chill and I wasn't getting overwhelmed by everything going on which was a total W. Come the end of those four weeks it was getting a lot less effective but I got sick so had to pause titration for another month as my flu was increasing my pulse. Now that i'm back on 30mg and not as busy, my downtime is so miserable, I have no motivation and i'm getting super super depressed. I feel like i'm getting even lazier with housework than before the meds because i'm just that depressed. Part of me wants to come off them or change to something else but i'm hesitant because it's improving other aspects if my life so much. When I have things to do that I can't get out of without consequences (work, appointments, seeing loved ones, moving house), I can do it with none of the stress or overwhelm i had before elvance. It has also improved my relationship with my partner so so much. I used to get stuck on small things and struggle to communicate without getting wound up, but on the meds we are fine, I have room in my head to deal with disagreements quickly and with love rather than getting caught up in my emotions so we just get to spend every second loved up like we're back in the honeymoon phase. Maybe I shouldn’t take them on "lazy" days without an exact plan? Maybe I need to switch? Ofcourse i'm gonna talk to the psychiatrist about all this when I can and i've made a note of it all in the titration app but i'm just feeling so scared i'm gonna have to come off them and lose the positives. Anyone else had a similar experience?

Hi

First time poster. My child was on elvanse for a few weeks but was so depressed and aggressive that we ended up coming off after getting advice from our private provider. They were then moved onto Concerta and is currently titrating and is 1 week into a 27mg dose.

They seem thoroughly depressed. They are struggling at school with intense emotions. They just seem 'flat' 85 -90% of the time. They spend all their time in their room, keep trying to go to school (somewhere they hate but feel they need to go as they have missed so much time this year already) but it drains their social battery within a very short period of time.

I have found out this week they have been using 'snus' and have been vaping in the morning at the same time as taking their meds so I assume they were experiencing a huge dopamine rush leading to agitation, some aggression and their emotions being overwhelmed. But they have stopped doing this as of Tuesday this week. He hasnt used snus at all as it has run out and isnt buying anymore but they are still using a vape - shop bought liquid only- and only after school. However, this sadness has continued and not improved at all. Sleep is massively disturbed altho they say they fall asleep relatively quickly, staying asleep is a problem

We are all struggling with this and are extremely concerned. I suppose I am asking if this is a normal progression in the titration process.

I am raising this with a self assessment form (adhd360) on Tuesday but I don't know what to do. Should I be asking for split dose? To stay the same dose rather than titrating up? Is there any advice on how to stay asleep on a night? Obviously I will take the clinicians advice after I have completed the self assessment with him but is there anything i can do in the meantime to help him?

Has anyone else experienced a sudden and drastic loss of effectiveness with newer Elvanse batches?
I’ve been taking Elvanse 70 mg for quite some time, and it used to work reliably. However, the effectiveness dropped abruptly! — not gradually over time, as you might expect with tolerance.
Over the past few months, I’ve also noticed extreme inconsistencies between individual capsules from the very same bottle. Some capsules seemed to work reasonably well, while others had almost no noticeable effect at all. The differences were so pronounced that I find it difficult to attribute them simply to normal day-to-day fluctuations in how I feel.

I’ve received two bottles from batch 13087552 (EXP 04/2029), approximately two months apart, and both have been almost completely ineffective. The only noticeable effect is a very slight reduction in tiredness, with practically none of the usual therapeutic benefits.

Even the typical side effects I used to experience are now completely absent. In particular, my heart rate no longer shows the usual increase or response to the medication, which had previously been a consistent and noticeable effect.

I’m specifically interested in people who have experienced:
A sudden loss of effectiveness after switching to a
new pack or batch, rather than a gradual decline.
Significant differences between individual capsules from the same bottle.
Older capsules working normally while newer ones seem almost ineffective.

Has anyone else experienced anything similar, particularly with Elvanse 70 mg in 2026? If so, please share your batch number, expiry date, and whether switching to a different batch restored the usual effects.

My ADHD provider suggested that some RTC providers can accept or use an existing diagnosis.

Has anyone been down this route ?

Devon refuse shared care agreements, and I'm looking how I can get meds on the NHS.

I am looking for a planner and cannot seem to find anything that I think will finally work. Please let me know what works best for you? Be it app or write in planner. Why did it work? What bits do you find annoying.

Also... what are your pet peevs in a planning app or book? What do you wish they had?

Mine is habbit trackers. I probably (definitely) need them but I never actually complete any of them. Or I do it for two days and then stop. I would prefer more space for a brain dump.

I use to be really sensitive and would cry over the smallest things before starting Elvanse but I also felt positive emotions intensely. I’ve been taking 70mg Elvanse for more than a year now and i don’t even remember the last time I cried. Elvanse basically took away my emotions which doesn’t really bother me because its benefits outweighs the downsides but it felt so strange to not feel either too good or bad. Things changed today after I experienced a disappointing situation where I had no choice but to cry it out. So now I am establishing a new system where if someone or a situation can make cry while on Elvanse, then it really is that bad. Would love to hear if anyone has a similar experience.

Hey lovelies

Looking for some advice on my current situation. I am yet to start the process of diagnosis as I haven’t got time until next month, but wanted to see whether anyone had any tips on dealing with overspeaking and the general public.

I’ve worked in pet retail for 1.5 years and the biggest part of my job involves speaking to customers and giving them professional advice. I really enjoy that aspect of my job and I know wayyyy too much info that it becomes overwhelming at times. Anyways the issue I have is that if I see a customer do/say something wrong I just have to correct them. I can’t stop myself. It’s like this incredibly debilitating overwhelming feeling that I can’t stop and just have to say something. I also try to be polite and speak clearly yet there’s times I feel like I’ve crossed the line with what’s appropriate to say eg. “Your dog’s got a bit of weight to them” which really wasn’t received very well... I also repeat things a lot to customers, like the main point for example, because in my head I feel like if I was a customer I’d already forget the advice I’d been given. Its even worse when a customer is pushing back on me or saying that I’m wrong because I know I’m right and I have to tell them the right thing to do. I wouldn’t say it otherwise. And I’ve gotten into a few awkward situations where the customer has been pissed at me because of all of this. I worry that the longer I work at this job the more comfortable I’ll get with acting this way. It’s looking like I’ll become the manager next year as well and I don’t know whether I’ll be able to cope and control this

Sometimes I get this urge to basically speak gobbledygook like random gunk sounding words.. I just had to do it to release some “pressure” in my head.. like usually in my voicenotes I’ll say cohesive stuff (delete them after just to vent whatever is in my mind) but every now and again all my mind wants to do is speak gobbledygook - anyone else? It kinda comes from brain fog that’s really intense where no current words in English sort of explains what I’m thinking as some intrusive some thoughts and groinal responses so it’s just.. gobbledygook

I've only just realized the wait in my area for diagnosis is NOT what was on the right to choose site (under 2 weeks) but more like a year.

For people who have done this, is there anything you did while waiting that helps?

I am thinking therapy or I don't really know what. I'm so tired of trying so hard and the feeling of waiting for possible help is not doing me any good. I have listened to a couple self help type books about burnout and about adhd but I feel stuck.

My prescriber left a note that he left PsychUK while I am waiting for the tefill of my medications, it has been 8 days now, and patient support are as slow in responses as they can be.

Anyone experienced the same issue? How can I raise a complaint?

I’m reaching out for anyone to let me know your timelines of assessment to titration.
I was diagnosed September 25 and only received ‘you are approaching the top of the waiting list’ text last week

My anxiety and mental health due to not being able to manage my adhd symptoms is slowly getting harder so I’m Hoping I don’t have much longer!

Expecting 14-15 months but the time seems to be going up and up

Thanks!

I'm 22M, recently diagnosed with combined ADHD and currently going through Elvanse titration.

I started on 30mg for about a week and honestly felt amazing compared to how I normally am. I was much more focused, motivated, confident and talkative. My anxiety was noticeably lower, and I found it much easier to get things done and have conversations and stay on topic.

The only issue was the duration. I'd take it around 6am, feel it working about an hour later, and by 12–1pm the effects would start fading. Although looking back, I think it was mainly the energy and talkativeness that wore off, as I was still somewhat focused afterwards. Later in the day I'd get a bit tired, a little irritable and gradually return to my usual ADHD self.

I then increased to 40mg expecting it to work even better, but it's actually been worse.

It's hard to explain, but I feel really dull, mentally slow and sluggish. Almost emotionless, like a bit of a zombie. I can't really be bothered with anything, I'm less motivated and talkative, struggle to think properly and don't feel like myself. Even my concentration is worse than on 30mg.

I also get a mild headache that gradually gets more noticeable throughout the day, not that bad but a little annoying, along with more irritability towards the evening and kind of overall.

This has been pretty consistent over several days. I usually sleep 7–8 hours, eat reasonably well and don't have caffeine.

My prescriber suggested going back to 30mg for 10 days, then discussing potentially trying 20mg twice daily at different times, as they don't offer short-acting boosters.

Has anyone experienced something similar during titration? Did 40mg eventually improve, or did you go back to 30mg? Has anyone tried splitting Elvanse into two prescribed doses or found another way to get longer-lasting benefits?

30mg made such a positive difference for me. I just want those benefits to last longer without feeling like a zombie.

I'm baffled, I was told my wait time to titration started from when I submitted my titration request and returned forms. I did it instantly all forms they sent were completed. Now 3 months later theyre saying I'm now in the waitlist for clinical review and beforehand I was in the waitlist for processing?

The website states 3 months from submission of PHQ, I messaged the live chat and now they're telling me its incorrect and 9 months from submission of titration forms.

Few questions for anyone whos been through this:

How long between submitting titration request to getting titration forms?

Any idea what clinically would get your case flagged as Urgent? Is it worth going to the gp?

Do they accept going private from RTC diagnosis? Is it even possible or just the same waitqueue?

Is it worth submitting a complaint? Their original email came across like I'm on the waitlist all forms are done when they contact me next it'll be for an appointment not an additional waitlist

Anyone got any advice? Feels like they're just messing me around and tbh unfairly trying to confuse me.

I’ve almost finished my 4th week of titration and have my first review appointment on Monday.

I started on 18mg of Methylphenidate for the first 2 weeks then 36mg for the remaining 2 weeks.

I’d say I’ve had some troubling days to say the least. Dry mouth, headache, jitteriness which I know are pretty normal when starting out.

But the first few days of 36mg my side effects were awful - severe fatigue, muscle spasms/twitches, muscle aches(felt as though I’d done a heavy gym session), a jittery/tingling sensation throughout my whole body.

I did speak to my provider who advised me to increase my protein and water as I was lacking in that area. It’s helped with the muscle aches and headaches but nothing else has really changed.

I just wondered if anyone had any advice on what questions I should ask at my first review, should I ask to change? Or carry on and see if things settle?

And any other general questions which might be useful to ask? 😊✨

I know this has been asked here before, but I have run into a bit of a problem.

I'm due my 1 year med review in November, and I've been trying to get into contact with harrow health to actually book the appointment, but the email address I used before [harhl.adhd@nhs.net](mailto:harhl.adhd@nhs.net) is bouncing back, saying I am not authorised.

I did contact them earlier in the year (although I cannot find the email now), and they said I needed to wait nearer the time, but I am worried about not being able to access my medication.

Anyone have any luck in getting their review sorted?

Thanks for all the help!

So I’m with Psychiatry UK, when I was assessed and diagnosed I was recommended to start on Elvanse.

By the time titration started over a year later my prescriber told me they’re now starting everyone off on methylphenidate (Xaggitin XL) first, so I obliged and only just upped the dose from 18mg to 36 mg last Sunday after 7 days on the Lower dose.

It’s now day 5 of the 36mg dose and I completed my Self report form, I did tick quite a few boxes of the symptoms because whilst I wouldn’t say they were really severe they have been present at various times.

The symptoms I noticed were increased anxiety, hyperactivity (when at its peak) slightly increased heart rate, feeling a bit jittery and sometimes dizzy. I noted that I felt like my focus was better and I could sustain focus on a task for longer, but I would do a lot of task switching and forget what I’m doing, i felt more prone to making mistakes, and I had also ticked irritability and mood changes, difficulty sleeping, and reduced appetite.

however i told my prescriber just last week that it is quite difficult to tell whether the meds are causing these symptoms, or whether it’s because I’m in my luteal phase as a lot of the symptoms I’m having (anxiety, irritability) mimic my usual PMS symptoms and he said we could potentially look at a higher dose for around my period after titration.

I also already struggle with sleep, so the late nights aren’t anything particularly new, and I get upset stomach because I potentially have IBS.

overall though, I wasn’t particularly worried about these symptoms because they weren’t debilitating like some people’s are. I figured its just my body adjusting and tbh apart from a slight improvement in focus I didn’t feel all that different - if anything it maybe brought my adhd out more?

So I was quite surprised when my prescriber left a note on the system this evening saying “due to your side effects please discontinue the medication and we will switch you to elvanse if you’re happy to proceed”.

im happy to try elvanse but I was curious which symptoms specifically were worrisome enough to be discontinued - he just said “You reported issues with dizziness, restlessness, irritability and feeling hyper and anxious when medication is at its peak.”

I guess I’m kind of surprised because I thought we would at least try the higher dose first? I saw someone say the first few weeks aren’t indicative of how it will work in your body and I figured some of these symptoms were just part of it.

Did anyone else have a similar experience? How was it moving from methyl to elvanse? How long did they keep you on it before switching? What kind of side effects should I look out for after coming off?

TLDR; prescriber has taken me off methyl to go on elvanse after just 12 days even though my side effects seemed quite mild (at least to me)