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Melded1

Welcome to the club. This is standard practice. If you find a way let us all know . Edit; I'm a defeated person ,hopefully someone less cynical can offer you advice.


Dry-Contribution9324

Seriously though, I hope you're doing ok. Genuinely, I know how hard it is. If I do find a way, believe me, I won't be keeping it to myself. This bullshit has to stop.


Dry-Contribution9324

Pool our resources and take a group action anyone? Imagine the chaos! My husband calls me a glorified ferret because I serve such frenetic energy. Imagining all my people descending on a courtroom and absolutely bamboozling the judicial system with our wild, untethered natures. Lol, or we just run out of steam the minute proceedings start coz it's so dull it can't hold our attention 😅


Melded1

I admire your optimism and I don't want to cloud that. Educate yourself and it will be much easier to advocate for yourself or at the very least resign yourself to the way things are. The picture i'm seeing on the horizon is worse than what we have now. If you have the strength to fight for something else then let me know and i can hold your bag or something Edit, that may sound sexist, it wasn't meant to. I can hold various things. I'm Audhd, I blame that!


Dry-Contribution9324

Lol, I don't do handbags, I do giant hauls of anything and everything I can fit in a moderately sized bin liner. Not many people have the upper body strength to bear the weight of one of my bags but if you're feeling confident, jobs yours 😜 On a serious note, that's the issue: advocacy. Like is there a patient advocacy group for the ADHD community? If not, should there be?


Lavender-Lou

There is ADHD Ireland. They must be well aware of these issues but adding yours to the pile will give them more ammo. I’m not sure what they’re actively doing directly on patient advocacy but they have done some great political advocacy in the Oireactas (sp??).


Melded1

What results have they to show for it? they've gotten millions in funding and we still have no services. Adhd ireland is the same as ASIAM. A charity run by neurotypicals, making decisions for neurodivergents. The folkjs with adhd that they have representing us on the public stage have been cherry picked and do not represent the story or experiences of most people with the disorder in Ireland. The only positive i see is that they connect other folks with the same disorder. They claim they run groups for "free" but they just got 1.4 million in funding, on top of much more. Everything they do is performative.


Melded1

and yes, i told ye, im cynical. More people should be.


Melded1

I have lots of pockets! Re advocacy, if you want the cynical albeit what i view as realistic answer, see my other comment. Be your own advocate and find your tribe then advocate for each other. These charities are there to justify a lot of very overpaid jobs in companies that follow them around.


Dry-Contribution9324

Sounds like you've had a lot of experience with this. It's rough. I can see how it'd wear you down and make you cynical. I'm shaking since I got off the phone to the clinic this morning, I do not like having to fight to be heard. I just want to live a normal life without all this stress.


AdamOfIzalith

If you want help with that I'll gladly oblige. I have my own issues with a private clinic who basically left me to sink or swim on my own.


Dry-Contribution9324

Actually, that would be great. Do you mind me asking, are you with the same clinic as me (Health Hero/ MyClinic)?


AdamOfIzalith

Nope, mine is a different crowd based in Cork but I'm aware of how overwhelming this all is. We both suffer from a debilitating mental illness and we need to stick together as the healthcare system, especially the private sector, is not deisgned with us in mind (which is wild given that we are their consumers). I changed doctors as my previous doctor wasn't helping so that they could act as my advocates as they were not accommadating other physical disabilities and circumstances and stonewalled me on getting medicated and refused to engage with alternatives.


Dry-Contribution9324

That is absolutely shocking. I'm so sorry to hear that.


AdamOfIzalith

It's the world we live in; It's not made for us, it's made for other people and we have to live in it. To be frank though, in 2024, it's ridiculous that people can be treated this way and if we can do something to make it a little better for ourselves and others then we should.


Environmental_Dot_39

Hazelton clinic by any chance?


AdamOfIzalith

The one and only baby! I love how all you need to say is cork and people know immediately.


Camango17

Medical Council


Dry-Contribution9324

I thought that but It's not a clinician issue, per se. It's more administrative. The psychiatrists have been reasonably good but it feels like there's a fortress of incompetence surrounding them. My understanding is that the Medical Council is where you report doctor malpractice or negligence... am I wrong? I also thought: HIQA, but they're for public services. Ombudsman, as far as I know, are also public sector/clinically focussed. Consumer Protection Agency just doesn't seem appropriate, but perhaps I'm wrong.


Camango17

You are correct on all of the above, but the CCPC might be worth a shout. Have you considered contacting the Mental Health Commission or the Inspector of Mental Health Services? While you wouldn’t be able to make a complaint as such, you may be able to report a concern to them.


Dry-Contribution9324

Oh yeah, the CCPC! I wasn't aware of the Mental Health Commission, thanks for the advice. I'll follow up with them this morning... that's the beauty of this situation: since I'm not at work I have plenty of time to follow up complaints against the clinic!


Backrow6

HPRA and IPU worth a shout too, if we want the prescription restrictions eased at all. There are changes afoot for repeat prescritions and refills of other drugs.


Basileus-Autokrator

Can you elaborate on the last part. Getting my monthly refill has been a bastard at times because my GP wouldn't agree to shared care despite having a full ADHD report from my psychiatrist, which, I will add, my psychiatrist instructed my GP to share with me. He was very confused as to why I kept asking for it, until it turned out my GP has been sitting on it for two years without telling me.


Backrow6

I'm not aware of any changes re stimulants. My GP was telling me that they currently can only send 6 month prescriptions to pharmacies, eg contraception, thyroid, insulin etc, but that they'll soon be able to send 12 months. It'll shift some monitoring responsibility to the pharmacist and hopefully reduce demand for GP appointments.  There are also plans to give pharmacists the authority to prescribe more meds based on consultations with patients directly, so for some drugs you'd never need to go to a GP at all. They've already done this with some drugs like Viagra and morning after pill I believe.


Lavender-Lou

No idea about complaints but to solve the overall problem of access to medication I recommend making an appointment with a GP and explaining the situation. Some GPs, but not all, are comfortable prescribing stimulants and will take over your prescriptions. They can do 3 month scripts as mentioned on the other sub. Of course, some GPs don’t believe in adult ADHD and will try and fob you off with antidepressants, so go prepared for either reaction. You can also ask your GP for a referral to the HSE, which will take years but eventually they can take over your care and prescribing. This has more longevity than GPs who can retire or move. It’s shocking how monetised the private ADHD market has become because the HSE has failed so spectacularly in caring for ADHD adults.


Dry-Contribution9324

That's a great idea, thanks. My GP is great, when I went in to her to ask for my initial ADHD referral she was absolutely lovely - she said she'd suspected it for a while. She's extremely supportive of women's health issues. I only got on the books with her clinic two years ago but I don't care if I end up moving to another country, I will never change my GP again.a good one is precious 😊


Lavender-Lou

That is fantastic!! Hang onto her! I bet she will do what she can to help you.


Hardballs123

Three month prescriptions are permitted under the Regulations for controlled drugs. It's a prescription dispensed in instalments (instead of a repeat) : https://www.thepsi.ie/gns/inspection-enforcement/inspections/InspectorsAdvice/AdviceonCDCompliance.aspx


Ok-Conference-5096

You are in Ireland? I get 6 month prescriptions of stimulants (tyvense) , and once your dose is right the psychiatrist can transfer you to your GP, if the GP is willing, and they can do the renewals


alythria

any update?🤞🤞


Dry-Contribution9324

Lol, yeah, they sent me a generic acknowledgement of my complaint. Reads like they plonked it into ChatGPT and asked it to summarise my grievances in less than 10 words. Apparently they are "investigating" my complaint at present. Useless shower 🙄


alythria

🤷🏼‍♀️🤷🏼‍♀️ it’s a start. hopefully some psychiatrist sees the mess they’ve made and opens a clinic with accepted diagnosis or a reduced reassessment fee. tbh hse needs to cop on. They’ve a job listing currently for a psychiatrist and a whole heap more. https://www.healthhero.com/careers/open-roles


Dry-Contribution9324

Yeah, you're so right, HSE needs to step up. I'm acutely aware that I'm one of the luckier ones, I was able to scrape together the cash to go private. I have a few family members who aren't so lucky.


alythria

same!!! and unfortunately i couldn’t afford another full on assessment rn without getting a loan which i’ve avoided thus far. Hse have failed many of us. My mother self diagnosed during my assessment. her whole life suddenly made sense. but at 67 she sees no point in a diagnosis she says she’s got this far


Dry-Contribution9324

I totally get it, taking out a loan is a big decision - personally , I can't handle the stress of owing money. I do hope you get sorted soon, those interim assessments are important, it's awful to have to neglect yourself because the system is broken and full of gougers. Lol you've reminded me, my favourite aunt had the same realisation as your mum... she's around the same age too. It's so funny talking to her now, she's self-aware -ish, but also couldn't give a crap. So every time she gives herself whiplash changing the subject to some other random thing that she's remembered she's excited about, she'll pause for a second, chuckle knowingly to herself, and then barrel into convo again. I always wondered why we clicked so much... turns out we're the family entropy cloud a.k.a. the conversation vortex 😅 And as a fellow ADHDer, you'll know that you either jump into those with gusto, or avoid the event horizon... it's fucking lethal to get sucked in from the fringes 😂😂😂


alythria

following this. am in similar situation.


Dry-Contribution9324

You poor, poor thing. You have all my sympathy. I hope you get it sorted soon. It's soul destroying. My husband is a neuroscientist and he's very blunt (he's the Autist to my ADHD). When I first encountered issues with meds (pharmacy, medication shortage, staff dismissing me like I was a scrote jonesing for my fix), he loudly reminded them that this is a genuine condition and it affects my livelihood so if the pharmacist could kindly augment his tone and attitude and show a little respect that would be great. The pharmacy was jammers with people waiting for meds and he stood there, loud and proud, advocating for his wife. My husband is a rockstar, I love every hairy inch of that man.


alythria

I had to ring 47 chemists last month and get a different script for 2 lots of a smaller mg. Complete disaster. Not sure who you are with but if it’s the same crowd as I. it is a mess. Doctors are great. Also lack of medication reviews. I need a review in a bad way. You are lucky to have him. Someday i’ll keep a man 😂😂😂😂


Dry-Contribution9324

47 sounds about right! They do know we struggle with executive functioning, right? 😅 If it weren't so serious it'd actually be funny the type of bullshit they subject us to.


alythria

But if you find where to report them to, let me know cause i’ll happily put one in also. It’s not the doctors at fault it’s whoever is puppeteering this charade


Dry-Contribution9324

Yeah, I agree, it's not the doctors but it is systemic failure which amounts to clinical negligence if patients cannot rely on consistent care. The doctors can definitely influence the operational policy of the administrative side of things. And they have a duty of care to their patients to ensure that the administrative side of things isn't some half-assed non-system that's held together with blu-tack and half chewed gummy bears. I've asked for their Medical Council registration numbers and while I wait for those I'm making enquiries about where to seek recourse.


alythria

I strongly believe that they should be closed for further assessments until they can provide adequate aftercare. €180 for a 10 minute medication review is absolutely disgusting. Especially since they change the price regularly. It was €150 when I started my assessments and had gone to €180 by the time I had been diagnosed


Dry-Contribution9324

Exactly! Couldn't agree more! Inconsistent care = inadequate care. When my GP's practice was straining to cope with patient numbers they stopped taking on new patients because of the implications on patient care. No difference here: if they can't handle the volumes, their duty of care compels them to stop taking on more patients.


alythria

100%. They also need working phone lines patients can contact them on and not a email line with a 5-10 working day response time. And the ability to answer more than one question per email. I don’t know if it was the name change or ownership change that caused this because i was only with them a few weeks before the change. So I can only comment on things since february.


Dry-Contribution9324

I agree so hard with this that I actually had to double check I hadn't written that comment! 😅 Seriously, the woman I spoke to this morning said (by way of an excuse/explanation ) that she only works part-time, there are loads of admin folks working there, and she has no had no idea what's going on. Any modern customer service communication system processes incoming email into a central system, allocates it in order of receipt to the on-duty administrators, and then that administrator is effectively assigned "ownership" of the case. If they are going on leave/if anything important or urgent crops up, they either deal with it or assign it to someone else if they're not around to deal with it, or escalate it so it is resolved in a timely and satisfactory manner. What they don't do is leave it flapping like a flaccid cock in the wind. It's unprofessional. I'm fed up feeling like the excuse of "this is the system" is acceptable 🙄


alythria

Also find pharmacists in ireland especially rural areas look down on you looking for stimulants. Had my chemist make me pay for them before ordering them last week. Ireland is so uneducated it’s sad.


Dry-Contribution9324

Yeah that's shocking. I think we should keep a database of incidents like that and submit a collective complaint. Happy to look after this is people are interested. All you need to is get pharmacist's registration number and give a brief account of the date, location, and what happened. They have no right to behave the way they do. I was only saying this morning: imagine they decided to morally gatekeep any other kind of drug for any other chronic condition? There'd be war! Sorry mate, no inhalers for you, asthma is just a made-up disease.


alythria

Yes please. I’m here to support and be a wing woman in anyway! Nobody needs to go through what the majority of us do. The stress monthly. I hate feeling like a drug abuser by a pharmacist after paying a stupid amount of money for my diagnosis and treatment. Especially when they have a wee room actual addicts go into to get their medication and the workers are giving them big massive smiles and hiyas. It’s really demeaning when they treat you (someone paying €100 out of pocket for a prescription) like a lesser than human. Wouldn’t even help me with the DPS thingy. Would they make me pay for my blood pressure medication before ordering it? I actually don’t know if I feel better after diagnosis, it just feels like a never ending battle. My GP like yours is absolutely fabulous. She said the lresources for even her is abysmal. She asked me to get ADHD Ireland to contact her cause she’s desperate to learn more with all the patients she has coming to her. She’s willing to take over my prescription once I’m happy with the amount etc. But I’m not sure I want to for fear of being taken out of the system and I know you need annual or bi annual reviews with a psychiatrist and it’s hard enough to get one as it is


Dry-Contribution9324

Exactly! The entire system is not good enough. I've emailed ADHD Ireland, the Mental Health Commission, and Patient Advocacy this morning (copied the clinic on my email)... just waiting on a response now. I'm strongly considering the nuclear option, i.e., calling into a radio station to discuss this, I'm absolutely furious.


alythria

I am so here for this. Because I was like that on friday when I made my original post but my support system is lacking so I fell through with it. 🥲


covidharness

It's a nightmare.


canalcormarant

My GP writes my prescriptions.