The Department for Health and Social Care (DHSC) has asked the Care Quality Commission (CQC) to regulate all diagnostic assessments for autism and ADHD, once new regulations are in place.

“This new responsibility will increase the scope of our regulation, and most importantly, it will close a significant gap in our oversight, meaning that people receiving these diagnoses can have far greater confidence in the service they’re receiving,” said CQC’s interim chief inspector of mental health care Adrian James. 

At the moment, the CQC regulates services which offer both diagnosis and treatment of ADHD and autism, but current legislation does not allow the commission to regulate services which only offer diagnosis and not treatment. 

Full article: https://healthcaretoday.com/article/cqc-to-regulate-autism-and-adhd-diagnostic-assessments

And my brain can’t stop changing it to “Spaghatta Nadle!” from hyperbole and a half 😂

https://hyperboleandahalf.blogspot.com/2010/02/spaghatta-nadle.html?m=1

Well, yes I did. But I don’t know why 😅 and I don’t know how to handle it. I struggle with rejection sensitivity and it’s through the roof right now.

Basically, I was still on probation and everything is going well. It’s a small org and there’s been a lot of strategical changes in my short time there. I was a one-person team and my results really spoke for themself. My manager only ever spoke highly of me and I never had a proper 1:1 where I was provided any feedback about areas of improvement.

Last week, my manager made a comment about senior team wanting to see more productivity from me. I’ve been there almost 5 months and I only just received a work laptop Monday and got fired Tuesday btw! 😅

Anyway got a call out of nowhere. I just picked up and it was my manager saying they’re ending my probation and I can log off. I obviously asked what had happened and was simply told “I’ve been told to say that we will not be providing feedback and there’s no further discussion. It’s a done decision.” I did ask if it was a redundancy and was told explicitly no. Was it my performance? No, we’re simply ending your contract.

VERY CONFUSING…

And then my manager (who is in the senior team fyi) said she loved me to bits and thinks I’m fabulous.

so bloody weird. So now back on the job hunt while juggling RSD and a horrific job market that does not favour the disabled

I’m with CareADHD going through titration right now, been with them for almost a year, on meds since July. I’ve seen a few people posting about an email they got from CareADHD with the name change, and I know they’re going through the process of changing the number you can call them on, but I’ve heard nothing about a name change and didn’t get anything from them?? Please somebody clarify this for me, I feel like I’m in a twilight zone!

I can’t tell if this is a joke or prank, please be kind if I’m just being stupid and gullible 😭

Noodle???!

Dear Audience Member

Thank you for contacting us about our coverage of the independent review into mental health conditions, ADHD and autism in England, commissioned by former Health Secretary Wes Streeting and chaired by Professor Peter Fonagy.

We received complaints about our article titled“ADHD and autism at risk of over-diagnosis, says government review” and some other readers were unhappy about the live page titled: “ Young people describe 'unbearable' wait times after review of mental ill health, ADHD and autism support”.

There were three online articles on the day the report was published. The original story titled “ADHD and autism at risk of over-diagnosis, says government review” was published before the live page launched. The live page titled “ Young people describe 'unbearable' wait times after review of mental ill health, ADHD and autism support ” and the explainer titled “Autism, ADHD and mental health review: What you need to know”.

Some readers suggested that our reporting contradicted remarks made by Professor Fonagy on BBC Radio 4's ‘Today’ programme. In that interview, Prof Fonagy said there was no "snowflake generation" and that rising levels of mental ill health among young people reflected genuine distress and difficulties. Those comments were directed at suggestions that mental health conditions were simply being over-diagnosed. They were not specifically about ADHD or autism.

Other readers felt the headline gave the impression that the review found ADHD and autism were being over-diagnosed, whereas the review said it could not conclude that over-diagnosis was “occurring at scale”. Paragraph 33 of the executive summary states that: "...we cannot conclude that overdiagnosis is occurring at scale..." However, the same paragraph goes on to state: "...if present trends continue we are clearly entering a phase in which the balance of risks is changing... towards an increased risk of misdiagnosis and overdiagnosis..."

Our reporting reflected both points. The headline stated that ADHD and autism were "at risk of over-diagnosis". It did not state that these conditions were being over-diagnosed.

The initial article explained that: "It said there was a risk society was now moving from an era of under-diagnosis to over-diagnosis or mis-diagnosis..." and immediately went on to note that: "it was not possible to be absolutely certain or conclude over-diagnosis was currently occurring at scale".

Being unable to conclude that over-diagnosis is occurring at scale is not the same as ruling out that possibility.

As noted, the original article was only one part of our coverage that day. It was superseded early in the day by a live page which carried extensive reporting on the review's findings, including the rise in mental ill health among young people, lengthy waiting times for diagnosis and support, interviews with experts, as well as personal experiences of people affected by ADHD, autism and mental health difficulties. The later explainer article also included Prof Fonagy's comments and further references to the report's caveats.

The review covered a broad range of issues. Whilst some readers disagreed with the headline of the original article, our reporting sought to reflect the report’s findings across a range of articles. We are satisfied that the headline accurately reflected the review's conclusion that there was an increasing “risk” of over-diagnosis, whilst the accompanying coverage made clear that the review did not conclude over-diagnosis was “occurring at scale”.

We would like to thank you again for contacting us to make your views known. All feedback from readers is appreciated and shared with senior editors so that they are aware of audience concerns.

In closing, if you’d like to understand more about how your complaint is handled at the BBC, you might find it helpful to watch this short film on the BBC Complaints website about how the BBC responds to your feedback. It explains the BBC’s process for responding to complaints, what to do if you aren’t happy with your response.

‐-------------------------

My main point in the complaint was the BBC's assertion that:

"The review - led by leading doctors in the field - was ordered 10 months ago by Wes Streeting after the then-health secretary claimed in an interview that young people were over-diagnosed"

But since the said review found no evidence of overdiagnosis, why wasn't this fact reflected in their headlines?

Can anyone else find the Harrow Health medicatation request form on their website? It seems to have disappeared.
My GP is really busy and it's been 4 months since my diagnosis and they still haven't accepted or rejected my shared care agreement, so Harrow Health has been issuing my prescriptions. They even did it automatically for the past couple months, but I haven't had one come through yet this month so I need to use that form. But it seems to have vanished from their website.

Sometimes I truly think my brain is done for. I have to read and re-read a sentence or data and even then it either isn't understood well by me or I easily forget it. Sometimes I easily forget words and people have told me I don't make sense.

I was diagnosed with ADHD as an adult.

I am currently unmedicated as my mental health is in a really bad place, so waiting to see a psychiatrist and the ADHD provider has said it is best to see what they say and then titrate me on ADHD meds again.

Even when I was medicated before, this issue was still prevalent but not as bad. It feels like my mind is jumbled.

I do also have depression, anxiety and fibromyalgia which all contribute to the brain fog and poor memory.

Sometimes I think that this can't be the brain that took me through university and finishing a degree.

I really worry that this will continue to get worse and affect my future-career, relationships etc.

I just wanted to ask if other people also suffer from this. Any tips (other than medication) on dealing with this.

Looking for some help/advice. I had an NHS ADHD assessment in 2021 in Aberdeen, at the end of which they said I do have problems with inattention but didn't diagnose me. I was really struggling with my self employment at the time, and at the end they suggested I should just get a normal job instead as I "would feel obligated to go". I felt this was a bit patronising and dismissive, and that they were basically telling me to give up, but I took the advice. I proceeded to fail at keeping 3 different jobs, just unable to cope.

Anyway, I'm wondering if for some reason the NHS psychiatrist just didn't have a good understanding of predominantly inattentive ADHD and didn't diagnose me because I lack any hyperactive or impulsive symptoms. So I'm wondering if it would be worth trying a private assessment. I believe I have six of the nine inattentive symptoms listed in the DSM:

Often has difficulty sustaining attention in tasks

Often does not seem to listen when spoken to directly

Often does not follow through on instructions and fails to finish schoolwork, chores, or duties in the workplace

Often has difficulty organizing tasks and activities

Often avoids, dislikes, or is reluctant to engage in tasks that require sustained mental effort

Is often easily distracted by extraneous stimuli

The DSM says "for older adolescents and adults (age 17 or older), at least five symptoms are required".

These symptoms really affect my life heavily. But obviously due to my experience with the NHS assessment, I'm wary of going for a private assessment in case they just come to the same conclusion and then I've wasted my money. What do you guys think? Thanks for any help/advice.

As the above says, I’ve just been diagnosed with inattentive adhd. I also have an autism assessment next month. I don’t think I’m autistic, but the clinician says there are traits and so I should get assessed. I’m in a bit of a mess today. Yesterday my feelings gradually developed into feeling I was a fraud/imposter syndrome, who had fooled the clinician, and that it couldn’t be right. Today I still feel some of that but I’m just feeling unwell and upset. I live on my own so have no one to talk to (i have chatted to my older brother and a couple of friends about it) and there seem to be no ADHD telephone helplines or similar, I’m a bit all over the place and feel torn between disbelief and the horrible familiarity of some of the stuff I’m reading, also the realisation that I probably ‘used’ my anxiety to drive my academic career (lifelong hyper focus on History) along until menopause meant that I couldn’t do it anymore and I stopped (I retired early September). Are these confused feelings and imposter syndrome normal? Especially with late diagnosis.

Hi everyone!

After some long contemplation of my struggles, namely how much I've suffered after COVID-19 and in college - as well as passing comments (and insistent personal diagnosis) from friends and family with ADHD - I've finally took the first step in trying to get my diagnosis.

I've had my initial GP appointment and briefly spoke to my doctor about some symptoms I have been having and how it's affected me in the long run - my grades, my ability to study, the frustrating lack of concentration, you get the memo. After a bit of a talk he said he was happy to refer me, but I would have to look at this website to "choose what I'd have," to then go back to him so he could fill out "his part." I wouldn't consider myself exactly stupid, but, my GP is a bit infamous for not being too elaborative, so I'm not entirely sure what I'm meant to be picking nor do I understand the actual process of what I'm meant to be doing. This is the website he gave me which you all are likely familiar with: https://adhduk.co.uk/right-to-choose/right-to-choose-wait-times/

Whilst I have had a glance over myself, I'm still a bit lost on what to be choosing (and do I just tell the GP which one and that's it...? Am I meant to be filling something out?). Any kind of advice or personal experiences would be highly appreciated and/or beneficial for me as this is my first actual formal diagnosis with doctors, my other "diagnosis" have all been by a doctor but never anything solid. I won't be able to go private unfortunately as I do not have the capacity to financially support that, and I am on Universal Credit if that helps anything at all.

Thank you!

I actually can’t cope with the wait for titration any longer (I know it may not even work for me but it’s my only hope at this point). I find it actually cruel to have people who tbh at this age (in 40s) to actually get to the point of not being able to cope with the masking anymore and to ask for help and get a formal diagnosis (even though the world and his wife had self diagnosed me for years I was coping so thought what’s the point it won’t change anything). Fast forward and I’m no longer coping I got desperate so got assessed and diagnosed through rtc then to be waiting this many months with no end in sight for treatment is actual torture! I feel like my life’s on pause I’m miserable I know I’m horrible to be around but I just can’t focus on anything else.and you can’t tell anyone you’re struggling because then you can’t get treatment for the thing that’s causing you to struggle, and if one more doctor tries to shove more sertraline down my neck I will scream I was on it for years from being a teenager and constantly told gp it doesn’t work it makes me feel worse, got a bad leg oh you’re a woman probably anxiety here have sertraline etc etc. but that’s a rant for a different day. psychiatrist worded it well it doesn’t sound like anxiety it sounds like I’m just always full of nervous energy which I had been trying to say for years. Sorry for the long rant but needed to let it out somewhere!

Good evening!

I’m currently on the NHS ADHD medication waitlist with MerseyCare, but they can’t/wont tell me the estimated wait time.

They don’t do private services, so I’m hoping to go private shared care with Clinical Partners/My GP practice.

If I remain on MerseyCare’s NHS waitlist and start at Clinical Partners, can I eventually switch to MerseyCare when they reach out to me?

I’m on medikinet XL 60mg (40 in the morning and 20 in afternoon) but I feel like it doesn’t do much. It helps my focus in lectures but my task initiation is non existent so it’s not helpful. I do feel a bit more on edge also and my heart rate spikes to over 100bpm within the first hour then subsides. No loss of appetite or other symptoms. I didn’t like the fact that I had to eat a big meal with it as it’s hard to eat a big meal for the second dose due to my timetable. I asked my provider if I can switch to Elvanse as I heard this is really helpful for task initiation and pretty much everything but he said no because I have no side effects with the medikinet. I don’t think medication should be prescribed based on your side effects, it should be based on how it’s treating your symptoms. I really don’t understand why he wouldn’t let me try out Elvanse purely because I’m not having side effects from this one even though I told him i’m still struggling with my symptoms. It’s only helping with one aspect which is focus. I’m still avoiding takes, forgetting things, procrastinating etc. I have now been put on Xaggatin due to start in a few days bc he thinks the issue is that it’s not lasting long enough…Just wondering if anyone had any advice? Thanks! ☺️

With all the news about diagnosis, which is highly invalidating in many respects, it would be interesting to see how people received their diagnosis.

Are there actually many who have been diagnosed directly by an NHS service or are the majority having to battle through RTC and private companies.

Comments welcome about how the service sits and the quality of ongoing care if under an NHS service.

My gp accepted shared care, but they’ve began to prescribe me with xenidate XL 27mg , but I was on Affenid XL 27mg with my specialist titration.

I researched and xenidate has a different release mechanism to Affenid; one is a wax based release and the Affenid is osmosis.

I’ve read that you can get wildly different reactions to differing release mechanisms and I’ve gotten used to Affenid and apparently it’s bad to change brands. I’ve been through so many brands during titration and I definitely noticed the differences when testing them.

I asked my GP and they said they can only get xenidate via NHS and they’re ‘bioequivalent’ but thats not the issue, I’m concerned about the branding and releasing.
How can I get them to prescribe me my original brand? Has anyone else had this issue?

Hey guys and girls,

After back and forth psychiatrist visits, I’ve been told I almost certainly have ADHD, significant autistic traits and have been on the wrong medication for about 20 years. I’m told I’ve been using heavy masking techniques and that starting uni as a mature student has helped unmask them.

This doesn’t feel quite real. I’ve always known something isn’t quite right. I mean my head talks 24/7 it never friggin shuts up! I’m constantly distracted, perceive that I can’t learn (but can when I try) and really have lost the ability to do more than one thing at once. Things is all these traits have always been there, it feels like I’ve only just become aware.

A couple of months ago, I had what I described at the time as a divine intervention, though I’m not religious. Very open to ideas, agnostic let’s say.
Doctors think it’s because I’ve hit just over the year mark sober from alcohol, my wiring is essentially at full capacity. But these changes don’t feel like a gradual increase - it’s all at once - things are sharper, I’m making decisions like deleting most social media, eating better, budgeting for the first time in 20 years. Like lots at once makes sense. A better connection with people, wanting to socialise. It kinda sounds like a mid life crisis, but I feel mostly content, peaceful, like I’m back to being 16 again if I’m honest.

That’s exactly how I feel at uni. Like it’s a big exciting world, but I feel like a kid. I don’t feel like an adult. The things I do over the years have come more prominent, or at least that’s how I perceive it. Like I’ve always into things, I’m loud, I can’t wait to speak, I get extreme bouts of excitement and vision, then fall flat when it goes wrong. Lifelong traits that I suddenly want to stop now.

I mean what can it be? I still rationalise. I just have more focus, energy, drive for change.

I’ll get to the point. My apparent adhd has come out it feels. Has anyone had this level of masking that can resinate with similar? I feel like I’m going mad. I guess my stable family has just grown up accepting me as me. But I’ve become so aware, like very self aware.

The meds I’ve been on for so long is citalopram 20mg and trazodone 59mg. I don’t feel depressed at all right now and don’t think I really ever have been, more just confused.

I’ve quite literally only just opened up about all this stuff and made a very obvious effort to make my doctor aware of what was going on by diarising all my thoughts and recordings real situations. I put it through a strong ai reasoning system, and it comes out auDHD.

I’m not seeking diagnosis, but I’m very confused and it’s making me anxious. I know we’re all different in our little ways, but this feels so different. I feel relief that I’m getting somewhere but frustration at the times, even though I’m very aware I’m lucky to get a pretty fast tracked private assessment through the nhs. Any maskers out there with similar. Thanks for reading

Hi all

May be TMI - but have found elvanse has made me extremely hyper sexual, like some days i'm like a ravaging dog on heat.

Been on elvanse around 5 months now

Is this normal/expected? Is it just me getting used to actually having dopamine?

Hi everyone,

I’ve been struggling with my ADHD medication. I take 50 mg elvanse/ vyvanse, but it wears off way too quickly (after only 3 to 4 hours), followed by a heavy crash and fatigue. To get through the day, I was using two 5 mg dexamphetamine boosters in the afternoon. However, taking a total of 50 mg + 5 mg + 5 mg caused awful heart palpitations, chest tightness, and a racing heart. Going up to 60 mg didn't make it last much longer and gave me the side effects also.

After discussing this with my psychiatrist, I got some blood work done. The results showed a high turnover of young red blood cells (reticulocytes 114). Because Elvanse is enzymatically split inside red blood cells to become active, this rapid turnover might've caused my body to process it way too fast, creating a steep peak and a sudden crash. The tests also showed low iron saturation and a vitamin D deficiency, which doesn't help the situation.

With my psychiatrist we decided that I would now test a few specific supplements to see if they help smooth out the Elvanse curve, extend its duration, and hopefully prevent those crashes and palpitations.

The supplements I will be using for this are:

• Vitamin D3 + Vitamin K2 to fix my deficiency and support muscle/nerve balance.
• Lactoferrine (taken in the evening with iron) to improve my iron saturation and oxygen transport.
• Phosphatidylcholine to support red blood cell membranes and brain fog.
• Electrolytes (not the kind with acid that I was taking) to keep my hydration stable during the day without clearing out my medication too fast.

I will be testing this out over the next few weeks. Does anyone here recognize the fast metabolizing of elvanse/ vyvanse or have experience with these supplements?

I’d love to hear your thoughts, and I will post an update later on whether this help or not!

everything was completed in september last year but i’m still waiting an assessment and i’ve not been able to book or been told they are offering me an appointment i log in now and see this? does this mean i can book it now it’s just closed at moment or i need to wait even longer? based in west yorkshire so the wait times are bad

Hello. I was diagnosed via Psyhciatry UK (via Right to Choose) about 4 years ago. After diagnosis, I was put on Elvanse, which didn't work for me.

I then had a bit of a breakdown and stopped engaging with Psychiatry UK. They then referred me back to my GP, but it was as I was moving house so everything got a bit muddled.

I now need to try meds again as I am not coping and unable to work full time. I went to my GP but she said that she can't prescribe ADHD meds. She says I need to go back to Psychiatry UK, but they are ignoring my emails! Any advice?

I think I need more time to decide my dose, and I’ve asked for an extension. I did get wrongly taken off for 6 days then put back on them due to an error. But I’m just wondering what the chances are of me getting an actual extension is?

Thanks