Misc UK ADHD medication shortage

[Vastness]

Lol this thread deviated wildly from the topic.

Yes an increasing amount are refusing to accept shared care for ADHD medications, following a private diagnosis.

Many as a direct result of that incredibly biased, harmful, and sensationalist Panorma documentary last year, which basically said that the whole condition is a con, and that private prescriptions are worthless and can easily be faked provided the customer pays. I fucking hate that episode, and that Irish 'hipster' type guy with the stupid awful blue fisherman's beany hat and stripey shirt that surely only a clown would wear, who lied his way through several private consulatations and tricked the psychiatrists into giving him diagnosese.

ADHD: Private clinics exposed by BBC undercover investigation

An undercover journalist for Panorama is diagnosed and given drugs without proper checks.

www.bbc.com

There may have beeen a little of that going on, in a small number of practices, but that episode caused tremendous harm by tarring every private practice with the same brush.

Many local GP practices have decideded either at the local trust level, or some on an individual practice level, that they will no longer accept shared care following a private diagnosis, as a direct result of that program. I have been shocked to read on ADHD forums many individual cases of individual Drs mentioning that episode as an explanation for their refusal to accept shared care.

Yeah I remember that "documentary", was pretty frustrating to watch for sure, I did think they probably picked one of the most sketchy looking psychiatrists for the part they actually televised. There is some truth for sure to the point that once you get into medicine for profit territory there is a capitalistic incentive to diagnose people. However despite the judgmental, suspicious, scaremongery tone towards private ADHD clinics they didn't mention once the conditions that allowed this situation to arise in the first place, namely the complete dismantling of any and all public mental health services by decades of Conservative and Conservative-aligned governments so that for people who are struggling with ADHD symptoms there is literally no alternative except to wait on a waiting list for years and then probably be told to just "limit stress" and "take small steps" or referred to some apprentice CBT counsellor who will equally just give you a printout of whatever platitudes one could find just find themselves on google but which are probably not that helpful if they are at the point of seeking some kind of professional diagnosis anyway.

I'm pretty sure GPs aren't actually allowed to refuse shared care though, they may state that they are going to but if you make enough of a fuss about it and ideally involve some people higher up the chain they will be forced to relent, there isn't any legal basis for them just arbitrarily deciding not to comply with certain aspects of NHS policy (what remains of it, anyway).

Of course I understand why people would not feel comfortable or able to do this though, as ever the people who are least able to advocate for themselves are those who probably need help the most but will be denied it in our current slide towards dystopia.

 

[Bleaney]

I'm pretty sure GPs aren't actually allowed to refuse shared care though, they may state that they are going to but if you make enough of a fuss about it and ideally involve some people higher up the chain they will be forced to relent, there isn't any legal basis for them just arbitrarily deciding not to comply with certain aspects of NHS policy (what remains of it, anyway).

I really don't think that's the case, and reports of exactly this happening are very widespread on ADHD forums.

Sometimes it's entire Trusts that control a whole area that make the decision that affects every practice within the trust, sometimes it's individual practices, or individual GPs. The most common reason provided is that they don't believe many private diagnosis are sufficiently rigorous, and so that seems to be all they need to say, and they can then adopt a blanket refusal policy to accept shared care for everyone concerned. Some of them are declining shared care from certain specific private practices and accepting others.

Surely it shouldn't be that easy for them to opt out, but unfortunately the reality seems to be that it really is!

The stats for the rates of positive diagnosis for those individuals that get through the screening process, and feel sure enough that they are willing to spend lots of money on a private assessment, actually show a minimal difference in diagnostic rates between NHS and private assessments. The sample population that has got that far has already been screened and also screened itself, but the last stat I saw was that 90% of patients who go for an NHS ADHD assessment get a diagnosis, and 95% of private patients get the diagnosis.

So it's clearly not a huge difference, and the large scale opting out of shared care does seem to be extremely unfair and disproportianate.

 

[50shadesofDave]

Is a private mental health assesment expensive?
I've tried to speak to two NHS gp's in the past about all the trauma that i carry from childhood, and several deaths of friends in the late 00's culminating in being assaulted in 2010 leaving me with sight loss and fractured jaw/eye socket/ cheekbone and small skull fracture.

My gp's insisted it's deppression but i don't agree, i listened at the time because i believed in the system and that they had my best interests at heart.

I was put on 150mg Effexor and 30mg mirtazipine. This combo had me all over the place, blacking out all over the show and a few months off work, i still have scars on my face from blacking out and waking with no recollection of the previous day, the penny dropped about the NHS when i told my gp this and he said i may be better staying on the combo for life ( i ditched it and pretty much the NHS).

I don't feel depressed at all, i do feel anxious and vulnerable (probably why i self med with benzos).

My childhood stuff is heavy on me, i'm a mistake basically, my folks wanted a daughter, they were loving but i was shipped around a bit, to live with grandma and aunts etc.

I need to talk to a pro but i'm dead against going back to NHS.

Would i need a referal from the NHS? Or do i just look for someone near to me.

Thanks for any advice good people.

 

[Bleaney]

Is a private mental health assesment expensive?

Probably.

It depends exactly what they are assessing for.

The neuro-diversity assessments for ADHD or Autism etc tend to be ran by specialists in those particular fields, on the whole.

Although some of the worst ones don't seem to be highly qualified or experienced people. So you have to very careful when 'shopping around'.

For a private 'general' mental health assessment, or something specific, maybe relating to traumas, you'd need a psychiatrist or mental health nurse qualified and experienced to do that, which probably would not come cheaply.

You can ask for a second opinion, or referral to a psychiatrist via your GP. This sounds like a case where you wll really need to advocate for yourself, which can be hard to do. Maybe have some short bullet points in writing as you go in for your appointment, if you dont have anyone that can advocate for you.

 

[50shadesofDave]

It was my GP that became a stumbling block, i did try and speak to him about the trauma and he insisted it was depression and put me on effexor and mirtazipine, i did'nt take to it well and had an awful few months on it (still have scars on my forehead from falling when blacking out)

It was his response when i went back and told him what was happening, he said maybe give it a longer period to settle in to them, and i may need to be on them for life, i kicked off and accused him of taking financial kickbacks from the manufacturers. This was 2011 and i don't think i've been back since.

I may try and move to a different gp. It's not that i'm looking for a script for anything (hate stims) i just want to know why i can't let go of things, and why i retreat/isolate as my general outlook and confidence goes, it really does affect every area of my life.

A quick look online last night shows a 16 week waiting time minimum in my area going off reviews from service users, hence me looking for a possible private appointment whilst it's at the forefront of my mind.

Anyhow, thank you for your advice Bleaney you are a good un.
Take care yourself pal.

 

[Jnowhere]

I am an American so I can't relate, but I had some online friends who told me there are issues with the NHS and getting private doctors is expensive? Is it true that you need permission to leave The NHS for private doctors? Also I don't want to invade your private personal life too much, but do you have the financial resources?

 

[50shadesofDave]

I'm not sure about needing the permission, i actually thought i needed a refferal when i tried to get someone to speak to in 2010/11, looking back my gp seemed to think he was the answer, i told him how i was feeling and i was present at the death of five friends and how i felt after being assaulted, he had an attitude that 'yea life's tough' but just try these, effexor and mirtazipine. No other questions asked and sent me on my way.

I did'nt know any better at the time and hoped the tablets would work but fuck me what a mess i became, i remember one evening waking up on the landing next to the stairs, it was 8pm and going dark outside, i thought i was late for work (thinking it was 8am) i put my uniform on and noticed blood on the carpet where i woke, a look in the mirror revealed a 4cm cut on my forehead down through my brow and a black eye.
I cleaned myself up and went to work but obviously there was no one there, the penny dropped as it got dark, i went to A+E and had 6 stitches put in as the cut kept bleeding.
The next day at work my HR manager asked what happened and ended up letting me have a couple of months off on full pay to adjust to the tablets.
The blackouts kept happening and i have similar scars through both eye brows and upper eye lids and one across my right temple.

My GP really was blase looking back, and my kick off with him about staying on them for life was just about the last interaction with the NHS i had.

I stopped the effexor + mirtazipine whilst off work, but always had sleep problems which i just self medicated for.

I've spoken more on this thread than any GP or MH specialist but i really need to talk to a specialist as the next decade can't be like the last decade.

I think i'm going to change GP but i just feel they're all the same, which is why i thought if i go private i can swerve the NHS.

As for finances i'm not in a great position but i could find a way if i knew i was getting to speak to the right person.

 

[Jnowhere]

I'm not sure about needing the permission, i actually thought i needed a refferal when i tried to get someone to speak to in 2010/11, looking back my gp seemed to think he was the answer, i told him how i was feeling and i was present at the death of five friends and how i felt after being assaulted, he had an attitude that 'yea life's tough' but just try these, effexor and mirtazipine. No other questions asked and sent me on my way.

I did'nt know any better at the time and hoped the tablets would work but fuck me what a mess i became, i remember one evening waking up on the landing next to the stairs, it was 8pm and going dark outside, i thought i was late for work (thinking it was 8am) i put my uniform on and noticed blood on the carpet where i woke, a look in the mirror revealed a 4cm cut on my forehead down through my brow and a black eye.
I cleaned myself up and went to work but obviously there was no one there, the penny dropped as it got dark, i went to A+E and had 6 stitches put in as the cut kept bleeding.
The next day at work my HR manager asked what happened and ended up letting me have a couple of months off on full pay to adjust to the tablets.
The blackouts kept happening and i have similar scars through both eye brows and upper eye lids and one across my right temple.

My GP really was blase looking back, and my kick off with him about staying on them for life was just about the last interaction with the NHS i had.

I stopped the effexor + mirtazipine whilst off work, but always had sleep problems which i just self medicated for.

I've spoken more on this thread than any GP or MH specialist but i really need to talk to a specialist as the next decade can't be like the last decade.

I think i'm going to change GP but i just feel they're all the same, which is why i thought if i go private i can swerve the NHS.

As for finances i'm not in a great position but i could find a way if i knew i was getting to spgn̈ɓeak to the right person.

Shit, this tough because so many AD drugs are snri's or ssri's but their are some that are not. You need a psychiatrist to help find one is neither an snri or a ssri

 

[ageingpartyfiend]

Gotta keep in mind that most mental health and sp.ld / neurodiversity dignosis are flexible - ie they are just how you are presenting at the time and which 'box' that puts you in. You present with A, B, F and G and so you 'are' bipolar. Add a 'C' to that box you 'are' schizoaffective'. Etc

Get assessed by 5 different pro's in 6 months you are gonna get a few dignosis, probably.

It's a framework via which they are trying to understand it all, mainly

@50shadesofDave 's tale above is typical. GP's often have extremely limted mental health training and have the power to whack people on incredibl strong drugs like effexor for the rest of their lives? Unethical and abusive, imo. Well done for taking matters into your own hands and getting off that shit mate. Millions worlwide believe the 'authority' and have suffered immensely as a result. Yeah, some mh meds help some people. Some meds, some people.

 

[50shadesofDave]

Thank you for your replies folks,

I personnaly don't want another drug in my system, i just want to speak the the right person who can understand why my mind is like a washing machine stuck on spin cycle of thoughts of the past, and maybe offer coping strategies, i don't know but i've been silent and carried it long enough now, and the bag has become too heavy, if that makes sense.

Thanks again.

 

[LoginNotSecure]

Is a private mental health assesment expensive?
I've tried to speak to two NHS gp's in the past about all the trauma that i carry from childhood, and several deaths of friends in the late 00's culminating in being assaulted in 2010 leaving me with sight loss and fractured jaw/eye socket/ cheekbone and small skull fracture.

My gp's insisted it's deppression but i don't agree, i listened at the time because i believed in the system and that they had my best interests at heart.

I was put on 150mg Effexor and 30mg mirtazipine. This combo had me all over the place, blacking out all over the show and a few months off work, i still have scars on my face from blacking out and waking with no recollection of the previous day, the penny dropped about the NHS when i told my gp this and he said i may be better staying on the combo for life ( i ditched it and pretty much the NHS).

I don't feel depressed at all, i do feel anxious and vulnerable (probably why i self med with benzos).

My childhood stuff is heavy on me, i'm a mistake basically, my folks wanted a daughter, they were loving but i was shipped around a bit, to live with grandma and aunts etc.

I need to talk to a pro but i'm dead against going back to NHS.

Would i need a referal from the NHS? Or do i just look for someone near to me.

Thanks for any advice good people.

You can self refer to other outside agencies as well as to the NHS.

 

[ageingpartyfiend]

Thank you for your replies folks,

I personnaly don't want another drug in my system, i just want to speak the the right person who can understand why my mind is like a washing machine stuck on spin cycle of thoughts of the past, and maybe offer coping strategies, i don't know but i've been silent and carried it long enough now, and the bag has become too heavy, if that makes sense.

Thanks again.

all you are gonna get from the nhs is meds or 6 sessions cbt, with a likelihood of a 12 month waiting list, if you're lucky

 

[emkee_reinvented]

I've seen a lot of coverage on BBC news recently regarding a shortage of ADHD meds across the UK.

I notice that these articles don't actually mention the medication involved, but I'm not familiar with ADHD prescribing practices in this country. What is a first line ADHD prescription going to consist of?

Does anyone here have personal experience with this? It seems unlikely that this would be allowed to happen with something like a cholesterol medication. The statistic of only 11% of respondents receiving their full prescription in January is staggering if true.

Looking forward to hearing the experiences of fellow BLers.

Such a long thread, impossible to read all.

But hasn't the UK some pharmacist' s that are also dr and chemist. Producing dextro-amphetamine from self produced methyl-amine is technically possible. They do it over here, 1 pharmacist. Who if necessary can alo make the Lis-dex form, XR and dextro-methylphenidate. All in his own Pharmacy/ pharmaceutical lab. Medication's that are so seldom prescribed no commercial can make money on. But for other medication's we are also hit with the sudden shortage's. Never methyl-phenidate which about a 1/ 4 of the youth 8 years up get ( sarcasm) Anti-Epileptic side medication anti-cancer med's.

And without any local pharmaceutical production anymore, a lands medical system is dependend on the market, not a really smart move. Or the influence of privatized insurance company's on the price?

But you have NHS. So none applies except maybe the price.

 

[Metamorpheus]

Don’t know if it’s been said already and can’t be arsed to read the whole thread but, and not related to ADHD meds but quetiapine is currently in short supply too. Not good for those that get psychosis - I use if for bipolar, among other drugs, and it’s been a right pain in the arse finding chemists who stock it.

 

[emkee_reinvented]

Gotta keep in mind that most mental health and sp.ld / neurodiversity dignosis are flexible - ie they are just how you are presenting at the time and which 'box' that puts you in. You present with A, B, F and G and so you 'are' bipolar. Add a 'C' to that box you 'are' schizoaffective'. Etc

Get assessed by 5 different pro's in 6 months you are gonna get a few dignosis, probably.

It's a framework via which they are trying to understand it all, mainly

@50shadesofDave 's tale above is typical. GP's often have extremely limted mental health training and have the power to whack people on incredibl strong drugs like effexor for the rest of their lives? Unethical and abusive, imo. Well done for taking matters into your own hands and getting off that shit mate. Millions worlwide believe the 'authority' and have suffered immensely as a result. Yeah, some mh meds help some people. Some meds, some people.

Guess its pure luck the Dutch have an underdog Pharmacist Chemist, but looking at old youtube Uk had em too.
Not only did home made preperations of DiAcetylMorpine, Cig's infused with Methadon (might be wrong on that one).
But what was most bizar were the pharmaceutical Crack infused fags. That where replacement therapie for the hard core crack heads.

Edit: Here there are 3 categorys meds available: Branded and generics from pharmaceutical company's and pharmacist home preperations, all covered differently by health insurance company's. Bit like a medical jungle when looking for supplies.

And that Diagnosing thing and psychiaters and especially psychologists, that are connected to an mental health care instituition. Are compared with free psychiaters psychologists worthless.
Most free/ own practic are ime humane, emphatic, reasonable and knowledgeable. Like day and night.

However the ADD diagnosis imo was just forged by me and gaven by a institution, years later after lots of feedback. My ADD diagnosis, which after meeting many free/ unfree psychiaters, drs, psychologists, neurologists but weird enough not reckognized by psychiatric nurses or addiction dr's. Now know is really true despite my forge.

But another diagnose they glued on me through a '100 %' accurate DSM based psycho diagnostic test.
A diagnose, the institution didn't had the guts to tell me in the face.
I found out the outcome of the test years later, in my family drs medical file. While it was not in my institutions medical dosier, not the letter to my dr nor the outcome of the test like my doc had?

Wisest thing for everyone to do. Always ask a copy of YOUR medical file and never give authorisation for external drs to directly contact your dr/ therapist whatever. Let the papers go through your hands to your care taker and vica versa back to the one who asked! That way you have influence on the content and know the content!

Well the so called 100 % accurate test, which bothered me a lot. A test don't lie right, then again they had just put me on methylphenidate and the test explicetly mentions it must be taken at a base line moment. Which kinda grinds with the fact I was spun as a coke head all day.
Three 2 nd opinion's later, all with Psychiaters owning a private but free clinic. All way more professional then those working in the big companys, eh oops mental health care institutions.

They al 3 totally debunked the diagnosis, so a worthles waste of time creating unnecessary confusion.

The reasoning why always intrigued me, so after some reading about critisism within psychiatry. Institutions providing mental Healthcare way of working is eassier when made a bit abstract.

If a is client cured they did it, if not blame it on the clients personality disorder as if the client is not co-operating. And kicking them out. Gets rid of the clients that cause to much hassle.

After getting rid of the un co-operating/ not abbiding ones. They still stuck with the fact a cured patient often means no mo money. So keeping them under therapie, on meds and/ or regular comebacks. Or finding another disorder they can 'diagnose' makes money.

Edit: medically fact I once read, could be debunked by now (during the period dr shook hands and were humane)? There was a certain percentage like lets say 90 %, of the clients that just cure by themselves and/ or placebo. Visitting the doc. Clinics know this aswell, but also realize they have to make money. something to keep in mind.

 

[Bloby]

Such a long thread, impossible to read all.

But hasn't the UK some pharmacist' s that are also dr and chemist. Producing dextro-amphetamine from self produced methyl-amine is technically possible. They do it over here, 1 pharmacist. Who if necessary can alo make the Lis-dex form, XR and dextro-methylphenidate. All in his own Pharmacy/ pharmaceutical lab. Medication's that are so seldom prescribed no commercial can make money on. But for other medication's we are also hit with the sudden shortage's. Never methyl-phenidate which about a 1/ 4 of the youth 8 years up get ( sarcasm) Anti-Epileptic side medication anti-cancer med's.

And without any local pharmaceutical production anymore, a lands medical system is dependend on the market, not a really smart move. Or the influence of privatized insurance company's on the price?

But you have NHS. So none applies except maybe the price.

Im pretty sure lisdexamfetamine is still patented in the UK, so it can't be made or bought from anyone but the patent holder and is expensive. Methylphenidate has generics so it's less prone to shortages and cheaper so the NHS is more likely to prescribe this first, where as private you're more likely to have the choice.

I don't know, but i imagine both would need to come from approved suppliers with sufficient quality control measures rather than independent labs. Although I didn't know that was a thing so I'm interested to know what the main function of those labs is.

Ive not seen the documentary, but in general nhs or private mental health workers have to trust what the patient is telling them. Chances are they would get the same result via the public route.
I was told it was a 3-5 year wait for an appointment so they would have struggled to include a comparison in the film, and is the reason people a choosing to pay for private in the first place.

A lot of doctors who are doing private assessments also work for the NHS, if gps are genuinely worried then this could be made a requirement for shared care rather than denying it completely.

If anyone is thinking of going private i would suggest checking who is carrying out the assessments and going with an organisation that uses licenced psychiatrists who work or have worked in the NHS. They will often have a LinkedIn profile.

 

[emkee_reinvented]

Im pretty sure lisdexamfetamine is still patented in the UK, so it can't be made or bought from anyone but the patent holder and is expensive. Methylphenidate has generics so it's less prone to shortages and cheaper so the NHS is more likely to prescribe this first, where as private you're more likely to have the choice.

I don't know, but i imagine both would need to come from approved suppliers with sufficient quality control measures rather than independent labs. Although I didn't know that was a thing so I'm interested to know what the main function of those labs is.

The patent on Lis obviously is not an factor of influence, in NL. As since it went from National healthcare to particular aka health insurance company's.
We are small in numbers about 17 million people. A drug is only commercially marketed if there is a margin of profit, otherwise it wont be on the shelve.
Otherway around, the few exceptional forms of cancer, epilepsy, tapering strips for SSRIs/ benzos, medication in sacks timed & dated and the unregular ADHD meds but also Naloxone and Disulfiram. You know things health insurance dont really care for, as it costs money not makes.

Since the ammount of dex users went over a certain point there appeared the first commercial diver bringing Amfexa (brand dex-amphetamine) on the market.
So it outpassed orphan stage at this point.
But what was shitty, Amfexa wasn't covered by any insurance so would cost 400/ 600 a month. Law wise pharmacist prepration's are then longer allowed, as their is a brand available. So in a desperate u-turn the health minister turned her back to the law and went around.
As a result from the 3 producing that to my knowledge, producing ao dextro on their own. Only one is left.

Their pharmaceutical labaratoria are just as strickt and follow the same guidelines as quality control.
Some specialize in other orphan med's, anti-cancer and some others.
In a other, somewhere hidden likely, pharmaceutical DiAcetylMorphine is produced. For the most problematic heroin addicts.
But no illegal XTC/ Speed lab kinda 'labs'. More breaking bad, legal style.

Heroin was btw introduced in NL by the American army, as they selected with 'operation golden shower' (piss test) all junkie's from Vietnam and stationed them in the EU. Mainly germany but also overhere. Then soon after the heroine epidemic spreaded over EU. Fun facts.

 

[LoginNotSecure]

The most common reason provided is that they don't believe many private diagnosis are sufficiently rigorous, and so that seems to be all they need to say, and they can then adopt a blanket refusal policy to accept shared care for everyone concerned.

Because it's easy to setup a clinic, charge customers thousands and thousands of pounds and have them say, "yup, you've got xyz, here's a bit of paper saying thus" and send you on your way.

 

[emkee_reinvented]

"Is a (private) mental health assesment expensive?" If you mean the psycho diagnostic test, yes. They even warned me to show up, a assumption they have towards everyone with ADHD. A wrong assumption! Treahtening with fines when no show, the term they use if by some reason a client doesnt come on a appointement. Be the reason their agenda, their digital system doing the appointement fails.

You are the one that gets the blame, while I never missed one. They never questioned there own responseability (they never do anything wrong) or acknowledge there are still some flaws in their newly bought digital system. And with enough of these against you they can kick you out, and cover it so that the arrow points at you. You sabotaged the therapie, have an wrong diagnose you don't even know about but they do force it upon you and your reluctance to have it treated so then they can say goodby. Without getting the institution in trouble.

But what about I. Still untreated on wrong medication, so 2-nd opinions flew by. Got assured I am not crazy, the institution diagnosis was bogus. And got switched to dextro-amphetamine, a happy ending at last after all that wasted time and energy.

But still had had no treatment for what I had, or a clue what it was. Had to find out the hard way myself which took years, certainly changed my view on the state of the healthcare in NL. 0 to none.

edit: the psycho diagnostic test (forgot to mention) however is covered by your insurance (which is obligatory to have). So how much is insurance, atm about 235,- a month (1/5 of what comes in) but some save on this and choose the cheapest. I get a gouvernement discount of 124,-. As my income falls under poor, well take a good look and my situation aint that bad. There are people working who have less to spend. No breakfast for the kids, no no, only a paradise as disguise. Luckily most people in my area are superrich, of which I benefit, being in a big city you get the same deal, maybe just not in form of cash money.

If a job suddenly was on me, that would mean less money. Except when its a long term assignement with a well paid job. Still a slave but wellpaid guaranteed to last a lifetime. Everything is max 2 years contract's and when they end then your are further back then where you begun.

JAH. rastafarai