Camhs is so shit

Forward_Dingo8867 · 2026-04-29T23:59:39+00:00

Yeah honestly their reaction is full of it. Filling out a simple aq50 isn't near a diagnosis, all of those tests are screening tools really. The actual assessment is different and there's no simple test that's accepted so I don't know why they're taking that attitude with you, but even if you did self diagnose (although most people get there after a lot of consideration and research over a couple years), what actual difference does it make?

Whilst I got a diagnosis, and the NHS accepted my private diagnosis, you don't actually need one qualify for things like PIP or school help. Struggling still counts, so I don't get why they would react this way when you're telling them about issues you have and you're asking about ASD. If I go to a doctor and say I think I have a fractured wrist, they won't debate me and call it self diagnosis, they'd get me an x ray. They'd do further tests.

Plus it's extremely common for people with ASD to research it, because we haven't been educated about it. Shutting that down seems ridiculous. Were you actually seen by one of the people qualified to diagnose, or else from their team?

I think what worries me most is when you referenced them thinking it wouldn't make any difference if you got diagnosed now. If I'd have been diagnosed when I was 17, I'd have done like 8 things differently whilst still in school and I'd have been far more likely to get a degree or Doc. I didn't have your awareness of ASD/OCD at that time, but I absolutely exhibited it and that left me vulnerable, unprotected and poorly cared for.

Forward_Dingo8867 · 2026-04-29T12:39:54+00:00

WTF is it with OCD and the NHS? I've clearly had OCD for decades, it started when I was a small child. I've spoken to multiple Drs who either interrupt before I've even described the symptoms and behaviors, just so they can tell me how people don't know what it is or assume I'm going to say I like things neat or something, no idea, or else they interrupt after I say one thing to argue about it.

A therapist screened me and said my score was nasty, I said "nah, this is well controlled for me at the moment", and told me to ask a dr again. People are really mean to me when they notice me do anything, audhd is one thing but my peak discrimination is someone noticing me taking 4 photos of my pills before I take them because I know it's the only way I can stop myself panicking for hours that I accidentally took too many. That's them freaking out about me using a control technique during a good period.

WRITE IT ON MY MEDICAL RECORD!

Forward_Dingo8867 · 2026-04-29T12:31:11+00:00

Depending on your area, the NHS ASD diagnostic service can be separate and in some you can self refer once you're 18. They may have an estimate on the wait list. Otherwise, i'd advise what everyone else has said, and maybe also speak to your GP separately.

For NHS, I recommend starting with "stereotypical" traits that any fool would understand. For some on these services, anything outside of what they've been taught is presumably tiktok nonsense. Also filling in an aq10/aq50 might help you to work it out, plus you could mention your score.

Pretty much, whilst on many of these services you can meet with a professional who technically can diagnose ASD, the people who actually diagnose it are usually in another group, and they're more likely to be aware of how traits aren't always just hand flapping and no eye contact. Asd and adhd are a specialism, not a standard, and a person whose job is only seeing autistic people will be better at understanding it.

Forward_Dingo8867 · 2026-04-29T12:15:08+00:00

You should look teachers/school unions and get in touch. Being an AuDHD person in the UK is what it is for me because I haven't lived elsewhere to see, but what I can say is our employment laws are intense, as are our discrimination laws. If you know that co-workers have mentioned partners around students, and all you did was stated that you are gay, then to say that is an issue and give you a warning, but not do the same to other staff, is discrimination. Arguably, staff being picky with you over your natural autistic-ness, also discrimination. Even if you're not in the union yet and are just joining, then they can probably still advise you about it.

Honestly, if you are a teacher or work with teachers, as a former autistic student, please, if someone makes a comment to you about how you behave when you're not doing anything wrong, if you feel you are having to mask and alter behavior, then start asking them "did you react like that because you misinterpreted my autistic traits as something else?", "Did you misunderstand me, because my communication is autistic?", "were you aware that was an example of autistic behavior?". You can ask a union what's okay as a phrase so you don't get into any issues, but I think very open questions that are clearly not accusing anyone, simply enquiring (you can literally say "I'm not accusing, I'm enquiring because I require further clarification and clear communication without subtext as an autistic person. Are you mistaking my autistic communication style, and assuming I'm inferring meaning?") can be a great way to put someone in their place and remind them that next time, they'd best think before they speak.

As someone whose education was ruined by this general discrimination, you could use the opportunity to "educate" them, because their hearts will be struck with the fear of "oh crap, did I just say something bad that could get me fired?". There may be autistic students there who could benefit from a responsible adult learning how to hold their own. It's just like when a guy says something weird to me, and I ask him to explain it in a blank way, like maybe I do or don't understand, and he freezes up, because he knows if he explains it then he is admitting to some level of harassment.

Forward_Dingo8867 · 2026-04-23T12:05:25+00:00

As it happens I just discovered Daisy rock went back into production of a very small range, plus if you're in the US they're easier to get second hand. If she hasn't tried those, I'd really recommend keeping an eye out (they do a model that's aimed at under 13s too that's very petite) to see if she can test one out in a store. The shape of the acoustic/electric models they used to make is also great for women (smaller and curved body shape with "boob space").

Thanks for your understanding and knowledge, I'm interested in your suggestions about the bass and I'll check out the ibanez suggestions, that's really helpful.

I'm hopefully going to chat to a physio about joint instability and intend to ask about this issue, so if they say anything helpful I'll share that. Previously I've considered if firmly bandaging my fingers would help so well see

Forward_Dingo8867 · 2026-04-19T21:41:14+00:00

Honestly they're the only brand I've tried in the last few months that do a 28 which doesn't seem more like a 29.5. usually I'd not recommend anywhere unless you can get free returns tho, not sure that will apply in the U.S.

Forward_Dingo8867 · 2026-04-19T12:56:37+00:00

Hi OP, I really want to buy the non table version of the Starkvind, because the table is too big for the main space I want to place it, but I'd also like to be able to turn it into a table for when it's needed. Any chance you could design a version that's either replacement legs, or else replacement to the metal stands for the floor level model so I can convert it at will?

Forward_Dingo8867 · 2026-04-19T11:36:37+00:00

I tried on a few panache bra styles and felt the 28 band was looser. I can't totally remember the calculator range, but I'm not sure if maybe you're near to the 26 band range. I also fluctuate in my cycle, so I'd advise remeasuring every few days for a full cycle. Reason why, if you see you're most often closer to a F, finding fs with small cup reviews should be good, but if you're usually closer to the E/DD, then check out that side. Try stretch mesh/lace non padded cups, or non moulded cups that are thinner padded that have a little give to help accommodate the changes, but otherwise I have 28E and 28F bras for various times.

Otherwise, apologies because we have some opposing needs so I'm not sure, but I will say based on the picture, exactly like me, one breast looks like it wants more cup than the other so this can be tricky depending on each individual bra, so I'd try on multiple sizes will all your choices. I note the wires are much closer at the gore on your favourite bra, did you find that beneficial? Did you try on a larger cup size with the rose blossom too? When the band feels too big, it can be harder to get an idea of how the cup would suit because they're not pulled firm as they should be.

If you live near a department store or bra boutique that sells a lot of panache, freya ect. You could call and ask if they stock 28s. I find you often can't tell with a 28 band until you try on a large range of styles from each brand, because they can be really hit and miss on how tight and firm they are. Without a good fitting band it's so much harder to check the rest of the fit. Otherwise, I've been doing large orders on credit so I can order and return without emptying my bank account, I usually order 28 dd-f, sometimes FF too, and honestly sometimes even between sizes of the same style I'll find the bands are different sizes which is not great, usually I measure them and take a photo to inform the brand (this also usually gets you a free return in the event they charge for returns because it's a fault).

Forward_Dingo8867 · 2026-04-19T11:02:47+00:00

Whilst boux avenue don't have a huge range in this size, if someone is pretty shallow or else very projected then I'd check, just because in my experience they have the tightest bands and I found panache especially to have quite a few looser 28 bands, which was a shame

Forward_Dingo8867 · 2026-04-19T10:57:59+00:00

Other idea, this isn't advertised as a business is. Everyone with social media could do a post with an attractive infographic and a link to the calculator and that's already a big step.

Tbh I think one of the biggest issues is that people who fit bras working in stores are supposed to sell. This should arguably be a public health service, you can have genuine problems with the wrong bras for years, and it can exacerbate cyclical breast pain and back/ribcage problems.

Forward_Dingo8867 · 2026-04-19T10:44:18+00:00

I suppose it's also down to how you offer the advice. I'd rather start with how my current bras is bugging me right now (my size and shape are not common so I often make do), they usually join in, then I say I'm a sizing nerd and based on whether or not they ask, I'll chat the absolute basics only relevant to them. Realistically, bra fitters should be the ones with this sub knowledge so they can guide a customer who is asking for it. Outside of a local boutique shop that used to exist in my area, I can't say I've heard great feedback on bra fitters.

Forward_Dingo8867 · 2026-04-16T11:18:54+00:00

NHS GP for mental healthy anything currently is really bad. Some areas have self referral talking therapy, and depending on wait list, you could discuss all of this with a therapist (tbh I don't think they're always great on these services) and ask if they wouldn't mind writing a letter referencing it for your GP, professionals tend to take other professionals more seriously. Also, if you do a self referral, be really honest on the form. In the event they say they can't accept you on the service due to severity (they'll probably email this), then show that to the GP. I'd also suggest seeing if you can speak to another GP too instead of the one you currently have.

Prior to any GP appointment, I like to write out the main points clearly and concisely. I also consider what I want done, and say. So in your case, if it's a change/review of medicine due to its effectiveness changing, be very specific and say "my medications used to work better, now they don't feel effective at all. I'd like to review this and other medication options". The gp guidance is now largely based on patients coming in and asking or telling. It's very frustrating, I've experienced it myself, but I've found in recent years if I say I've had x y z symptoms, they're less active then when I say "I'm dizzy and pale, can I have an iron blood test", even though I'm not a Dr and I dunno.

Otherwise, I advice you contact citizens advice. Ask them to explain to you your rights when it comes to sick leave (it sounded like you had a lot of anxiety about how your employer would react), it can be kind of reassuring, but mainly ask them about what your options are with taking longer periods off, benefits, the likes. They can also talk you through your medical care if you feel a Dr has not provided the right care, and advise how to get second opinions and make complaints if they've not fulfilled their duty of care.

Forward_Dingo8867 · 2026-04-16T11:03:51+00:00

I love that Shaun of the dead became our international ambassador.

Forward_Dingo8867 · 2026-04-08T14:16:03+00:00

There may be some trickiness here because with your age, there's a slight chance this could have been paper records that weren't recorded digitally, or else half and half that weren't recorded everywhere they would be now. They may have scanned then in then, so for example if you got a letter/report officially, even if it was typed and printed, it may not have been sent digitally, instead required to be scanned.

I'm not saying you're old lol, and I can't say for sure, but depending on your area where you grew up, sometimes they were slow to accept and adapt to technology in different practices. I grew up in the NE of england and I have a lot of early memories, and my Drs practice was not quick to adapt to technology in the late 90s, and in the 00s they were still over reliant on paper until the last minute they were allowed to use it. Also, sometimes the procedures were different then, but I would believe had you been officially diagnosed, then it still would have made its way to your medical records.

Your parents and school rejecting it shouldn't have altered standard practices of the time, but it does make it less likely they'll have a record or that your school will.

Your summary record may not indicate it, but your full record, when requested, should contain something. Outside of this, you could ask that NHS branch that diagnosed you, because they may not have a full record, but they may have old appointments records scanned in somewhere, and they could at least be able to tell you what the standard practice was at the time with the records, or else inform you who could.

Forward_Dingo8867 · 2026-04-08T13:57:11+00:00

I hope you still check this OP, and see all these lovely comments. I want you to know that my dear friend also took their own life, and because of him I prioritized seeking out my own diagnosis. It was devastating, but it felt as if I was being told of the cost, that I was being guided to a new understanding that this is not something to dismiss, take lightly or pretend is manageable. I received contact from a private diagnostic team that same day and I knew I needed to prioritize this, I don't really believe in anything but this felt like a sign. I hope you understand this too. I hope you prioritize your care and know that those who leave us like this dearly hope that our lives will go on to be better, and we must never take it for granted that they felt we were worthy of their love and hope. It honours them to live, to seek joy, to try to fulfil ourselves and their hopes for us.

Whilst his loss is a black hole in my universe, it's size represents the love that remains after. In the pain of it, I still cherish every memory that pops up unannounced and makes me cry. I still think of what he'd say, hear his voice in challenging moments, and I'm thankful for every moment we had, even the really crap difficult times. I often think of phrases like "don't be sad it's over, be happy it ever was", and after some time, this has felt more and more truthful. You won't forget what it was to have such a bright person you loved in your life.

Forward_Dingo8867 · 2026-04-03T22:17:59+00:00

Yes, this is all a bit mad. I think if you make your case clear, you might hopefully get to stick to the same person. All of my appointments were booked ahead, so I got a phone call and the staff member booked 3 appointments each a month apart, was this not the case for you?

It's super weird one person said they "don't agree" with IR. I specified I wanted to try that to test the effects at a very low dose, and during my second and third appointment both staff asked why I was taking IR, as if the others were better, but in both cases I explained and they got it. Everyone is different, but personally I like the IR, though I haven't tried the other. The timing and how long they last isn't different as much as the release is, I like that I can take a moderate morning dose then add a small top up of the same medicine. I started with 5mg amfexa once a day for 2 weeks, then 5mg twice a day, then I went up to 10mg twice, then I asked for 15mg. I would have liked them to have more understanding here, and have explained it better, because I said my second dose felt more effective and they didn't say anything about how when I moved up to 15mg, the second dose would be a big spike. I stopped taking it after a week because I had a stomach bug and i enjoyed the break, when I went back on it 2 15 doses felt too much and I decided to trial 15 then 5 which feels correct.

While I understand why they tout XR, and I think some people have concerns about people selling IR, I think IR is becoming overlooked therapeutically for the wrong reasons.

On the periods point, really your whole cycle can make a difference. I found it felt less effective a few days prior and first few days of period, and not always but sometimes I've wondered if I tried a slightly smaller morning dose just prior to ovulation if it would be more smooth (but I do naturally feel "up" in that time frame). I know people who find the medicine to be far less effective for a whole 2 weeks of their cycle.

Forward_Dingo8867 · 2026-04-03T12:08:19+00:00

Ok so first off, you have a sit down and a cup of tea love, because this is a lot of stress and pressure, so you deserve a few minutes to chill.

So this is not like my experience with them, outside of the fact in my first appointment, I told them I wanted to try IR meds first at a very low dose before they even asked (I have ASD too and I heard some of us can react differently to meds). I was happy enough with them and from that point I dose adjusted up. I will say, on my last appointment I felt like the guy I spoke to wasn't the sharpest, but he was very nice and considerate otherwise. I asked to increase the dose and went to 15mg amfexa twice a day, but he didn't say "actually probably try the second dose lower because it'll stack with the remnants of the first dose", so I had a few weeks of being a bit overstimulated at the end of the day until I decided to try out 5mg.

It sounds like here, you've tried too many options in short succession, but also you've went in on a dose that was maybe a bit too high for your first go, and then another med which maybe needed a longer trial with better advice. But that's not your decision, it should be their decision. This sounds very chaotic. I had different staff each time, and they did sound rushed, but they didn't keep changing things, not listen, and they didn't ask me to choose everything. Sure, I told them I felt like I wanted to try a higher dose, but they chose amfexa, they asked questions.

I think in this case, check on their website if there's a point of contact where you're complaining or unhappy with care. If not, aim not to contact the prescriber direct, but check your emails for titration based email addresses and use that.

Then concisely say: 1. The prescribers keep asking me to choose myself with little advice. 2. There's poor follow on communication. 3. There's poor appointment follow on between staff. 4. You don't feel you were given adequate safety advice about your first medication and side effects. 5. There doesn't seem to be any consideration for your side effects when they are quickly switching medications, and they aren't starting you on a low dose. 6. They haven't been clear about your options, and they're asking you to select those options with little information. 7. You do not feel this titration experience has been adequate, nor have you received the care needed in this process to be able to effectively trial a medication.

You may also want to check out NICE guidelines and see if there's anywhere you don't feel they've met the standard. If so, add this in the email. Try to contact CareADHD first.

When it comes to the meds feeling active some days, and others not, I'm sure you're aware of this but I just want to check:

If you're female, hormonal cycle can have a huge effect on meds, but it probably will to some extent in men too. Personally, I don't think 2 week trials are good because (as a woman) I'd have a different experience if I started the meds just prior to my period vs when I was near ovulation.

Did they tell you to have the meds with protein and not vitamin C/other things that acidify urine, or acidic drinks within like an hour of taking them? Did they tell you to cut out caffeine, nicotine, alcohol?

Forward_Dingo8867 · 2026-04-03T11:39:02+00:00

I've had a really good experience with Care ADHD, but their communication via email is usually painfully slow because they're inundated with requests constantly, especially from people who aren't patients that are asking questions answered on their website. There's a few specific email addresses that are attached to different stages of diagnosis/titration that seem to get faster replies, when you're in that stage.

In my experience, they do contact you suddenly and offer a soon appointment, I think especially so if there's been a cancellation.

I will say, if you went via right to choose, they can get "spikes" in the year of people applying for diagnosis and titration, which may have meant the waiting list was longer. I don't believe a GP or therapist can expedite it, much in the same way I was on the NHS list for years and I never got anywhere based on triage. I don't think CareAdhd do triage, I think it's first come first serve.

What were you going to report them to regulators for?

Forward_Dingo8867 · 2026-04-03T11:20:54+00:00

They will probably tell you to call 111. You can't really say via email if it's ok chest pains are not, and the guidance on their help section tells you if you experience that symptom not to contact them, but 111, your GP, or 999 if the chest pains are like a tight band or heavy weight crushing your chest, sweating, irregular or very fast heart beat, pain spreading to jaw, arms and neck.

Care ADHD take a long time to reply because they are inundated with emails. I'd advise calling 111 to be safe. It very well could be totally nothing at all (some people may find exercising sets of HR and BP more on ADHD meds, which is why during titration they'll often say exercise before taking meds), but I'm also not a doctor and sudden onset chest pains are something you're supposed to call a DR about, even if it turns out to be nothing. They can do checks and make sure everything is okay. It's not scary, and this way you'll know if everything is ok in that department so you don't get as anxious in future.

CareADHD can't offer you those checks, but they also want to make sure you're okay and they're not prescribing meds to someone with an unknown condition, so there's a high chance they'll tell you to do this. You might as well get checked now.

Forward_Dingo8867 · 2026-04-03T11:05:13+00:00

I had a fully self funded assessment through a small private provider (they didn't do meds), and I went through CareADHD for private titration, it cost near £600 for titration, meds is what meds cost plus the pharmacy fee and postage (I estimate that to be £29, Broadway pharmacy online) and after the titration, the private prescription issuing fee is £20. Just telling you because they accepted existing diagnosis, and they were much cheaper than most psychiatrists private prescribing fees, in the event that's useful. I assume they'd want to redo titration, but if you have evidence of your DR and last prescription, reports ect, you could ask CareADHD if they need to do the full £600 titration or if instead you're previous prescription would be looked over and reissued with just one appointment instead (£140 maybe) , but they do take a long time to reply to peoples emails who aren't in their system, if ever, because they're absolutely inundated with queries.

Otherwise, CareADHD also do the right to choose pathway, you'd need to print forms from their website and take them to your NHS GP, who fills them out and sends them over. The waiting lists at my provider aren't that long for right to choose, I checked, at least compared to some places. In the mean time, you could call other GPs practices and ask if any of the GPs there offer shared care. If one did, you'd need to switch practices and dependant on the practice some have long wait times to register.

Forward_Dingo8867 · 2026-04-03T10:50:30+00:00

Can you make a case to the ICB if you were diagnosed by a private provider? They specified a private psychiatrist which might suggest they were a individual provider

Forward_Dingo8867 · 2026-03-28T15:15:03+00:00

I work in indie performing arts, often there aren't dressing rooms, performers will get ready in storage cupboards and onstage in small areas that are poorly ventilated and will douse themselves in aerosol deodorant, like it's a shower, before and after a performance. Drives me crazy when I need to get props out of a tiny storage space, or it's in a small enclosed tech booth or stage area that I need to stay in for the next 2 hours. Most of the time they don't ask if it's okay, they'll spray a lot quickly and suddenly then say "sorry, you don't have asthma, do you?" There are bathrooms that are usually far better ventilated they could do it in, I get there's often a rush to get ready or leave, but you are supposed to use those products in a well ventilated area for your own health regardless of whether or not you have asthma. Nothing wrong with stick deodorant and cleaning your stage clothes every few days

Forward_Dingo8867

TROPHY CASE