To think £290 for my prescription is insane?!

[Justintimeee]

Posting here for traffic

I was diagnosed with ADHD 18 months ago and have been receiving monthly medication since.

I have been having follow up zoom calls with my psychiatrist every 6 weeks at a cost of £170. On top of that, to actually have the prescription written is £25 and the meds themselves are £95 so it is a huge cost for me.

The meds have completely turned my life around so I really do not want to go back to life without them.

The issue is, I can no longer afford to pay for the £170 follow ups so regularly. I have asked for a prescription but it has been refused if I don't book a follow up so I am at a loss... I had no idea they were mandatory for me to get medication when I have been diagnosed.

Do I just find another doctor? Is it the same everywhere? I have been refused shared care due to some NHS rules against accepting patients from private ADHD doctors so I don't know what to do.

I am in Essex if it helps.

Yes, stimulants are controlled medication in the UK. I have to take my passport in to collect DD's meds, but I don't think any calls are needed to government lines.

Don't have to prove previous ones are finished either - we have long acting for weekdays and short acting for 'as needed' top ups so always have a supply of those that are used infrequently.

Honestly I do think there are private psychiatrists (not all) who will diagnose what they are asked to diagnose, and prescribe what they are asked to prescribe, within reason. That is exactly what they are getting paid to do, and their income would disappear if they didn't dish out diagnoses and prescriptions pretty freely.

The NHS leans too far the other way, but there are risks to both patterns tbh, and one is more fueled by self interest than the other.

That seems very expensive, even for a private script.

In Australia most medications are funded by the government- there’s a list - and it doesn’t matter if they’re prescribed privately or publicly, the cost is the same when you go to the pharmacy.

Under this scheme, for lisdexamfetamine (vyvanse here) the cost is $6.70 if you have a concession card (low income, chronic health issues, older etc), $30 if you don’t, most children with ADHD are eligible for a concession card.

If the medication you want ISN’T covered by the government then you pay full, non subsidised price. For Vyvanse this would happen if you weren’t diagnosed as a child with ADHD and you didn’t fulfil the criteria for a retrospective diagnosis (ie had as a child but not picked up then). Then, the full cost is $95 for a month’s supply. The long-acting methylphenidate types are similar.

If the non-subsidised, full price is $95 of a long-acting stimulant it seems odd that full price in the UK is twice as much.

Yeah it's really odd. On one hand they are dismantling and privatising the NHS so that people have huge extended waiting lists, and people are encouraged to pay privately for all sorts of things now, but for ADHD in particular even the fully qualified psychiatrists are apparently just diagnosing anyone with it for a laugh ?

So my psychiatrist who diagnosed me and my son, who works for a private company that we were referred to by NHS. Is she good or bad?

I think it's so bloody weird the attitude that people have towards ADHD, as if we are just drug seekers or trying to excuse our terrible personal flaws and get away with stuff, rather than just trying to lead a normal life as much as possible.
My medication has been life changing for me and my son, ( although not for everyone, my second son is also diagnosed but hates the way medication made him feel so he's decided to not go that route after trying it. My niece said the same - it's not for everyone)

I agree with this, although i can see both sides of the story too.

My movement disorder called tardive dyskinesia was diagnosed by a private neurologist, who had worked for both the NHS and privately. He said he had seen "hundreds of people who had TD, some of whom were falling off the bed with the symptoms "... yet three of the other neurologists that I saw before my diagnosis (which I actually self diagnosed) were quick to dismiss my movement disorder, and blame it on being their good old "functional neurological disorder", or in other words: a cop-out diagnosis so we don't have to admit these drugs cause harm.

I can very much believe that private psychiatrists are falling over themselves to get more patients and "overdiagnose" conditions like ADHD. Of course, not everyone who genuinely has ADHD will be diagnosed wrongly, and vice versa, and I'm not discredting anyone who suffers from these things.

But I do thing certain conditions and mental health problems have been "medicalised" to the point where we see more people saying "i have a psychological disorder", whereas they are just possibly feeling the range of normal human emotions.

It is a fine line between the two, i guess. The cynic in me says these things are overdiagnosed for a profit, and ego-boost for the doctors. The less cynical side of me can totally understand the frustration of being unwell, with no resources to fall back on easily for support.

I was diagnosed in the NHS psychiatrist’s waiting room before I had said a word😂

How did they do that?

We've had similiar with my son. He has a serious disability, more than one GP has said they aren't comfortable with his meds, one said he didn't need them and he had to miss a few days until we could get hold of his consultant and an emergency prescription. The meds can't be abruptly stopped and it really set him back.
The arrogance of the GP was unbelievable, consultant was furious. It doesn't help that we can't see the same GP twice, so everytime we have to go through the whole rigmarole of explaining why he isn't prescribed x,y,z meds instead. Even had one prescribe a med that had a very dangerous interaction, fortunately the pharmacist caught that.

Exactly 💯 You said very succinctly what I was trying to say lol 😆

I think it's so bloody weird the attitude that people have towards ADHD, as if we are just drug seekers

Accusations of drug seeking is the NHS's latest thing to beat patients up with, regardless of diagnosis. We've had issues with this too.

Try the GP Op, I’ve recently been referred for an NHS ADHD diagnosis and was told it would take a few months, not years. Got the GP appointment within a few weeks as well.

My GP changes my private scrip to an NHS one, try asking doc, at the end of the day you have already saved NHS money

I disagree. I think they do know what the drugs do, but don't like to admit thd harm they cause when they go wrong. My neurologist said I needed to actually avoid any medication like ADHD or epilepsy meds as they will make my movement disorder symptoms worse (and these medications are potentially a cause of my movement disorder too, as an adverse effect).

There are no NHS rules that prevent shared care agreements with the private sector (if you were feeling particularly snarky, you might ask your GP practice to show you evidence of that rule), however many GP practices do not enter into shared care agreements with private providers, and some will not even do shared care with NHS secondary care services.

The key part is that it is a shared care agreement i.e. needs to be agreed by both sides. It's usually for prescribing specialist drugs that fall outside the scope of what is known as GMS (general medical service) which covers what a GP is expected to do.

Those GP practices that don't enter shared care with private sector will cite concerns about the potential quality of private care assessment/providers (many private care providers are of course providing a good, safe service, but not all are: some are run by non-doctors who cannot prescribe themselves, or based outside the UK, and in cases like that the sole responsibility and risk for prescribing is borne by the GP. Even with UK based services, if the patient can no longer afford private care, there is no quick safety net like there is in the NHS - if I dropped dead suddenly/got sacked, my colleagues would be fielding the queries/prescribing/assessments for my patients until they could employ a replacement - that doesn't happen in the private sector. For patients who suddenly stop using private services/service shuts this could mean a period of time where the GP is being asked to prescribe without any specialist support, or for some services potentially there may be no NHS equivalent, so GP prescribing indefinitely, or patient having to stop the medicine and their condition deteriorating.

Even as an NHS consultant, I can't insist that a GP prescribes anything - and the reverse is true.

The best one I had on this was the GP who suggested I should stop taking my mood stabilisers because I'd been episode-free for 3 years and I 'seemed to be using them like a crutch' and 'perhaps it was time to try and do it without?'

My jaw literally dropped - the number one issue with patients with bipolar disorder is non-compliance with medication, and funnily enough I had probably been episode-free for 3 years precisely because the medication was working and I actually took it. After 30 years of not having the right medication, everyone had been delighted.

Yet I was made to feel like a pill-popping junkie...

from a scientific perspective the panorama program was very poorly done. My son was deemed not to fit the criteria for adhd by a psychiatrist who assessed him under the nhs, in my son’s words to something akin a police interview. Wanting a second opinion, At a private clinic he was deemed to have adhd and prescribed meds. They have been life changing. We are paying £150 a month and trying to get shared care. Going to be next to impossible as he is deemed to have been tested under the nhs already and not fitting the criteria. They set their band very high.

FYI I was referred to Psychiatry UK by my doc under right to choose. I joined their waiting list in July last year, having already been on the waiting list at my docs for a year. I had a 'welfare check' email in November, and am still waiting now.

That sounds like a very cleverly organised scam, OP!

Exactly. We know a lot about these medications because they used to be routinely prescribed very easily. If anything the psychiatrists, the Gps and the pharmacists are extremely cautious now. Blood pressure measured regularly. ECG, height and weight need to be monitored. Reviews.
I think it's a huge issue with certain medications that have potential to be abused, is that we forget that there are well researched medical benefits and it's implied that almost like criminals instead of needing life changing medication in order to manage life without everything falling to pieces.

The majority of ADHD meds are controlled drugs. Unfortunately you need to have the follow ups to get the prescription until you have a shared care agreement in place - that’s the law. However, it might be worth changing to a psychiatrist that is a trusted provider in your area to help facilitate the transition back to the NHS. It would be really odd if they don’t accept private diagnoses from anyone because that is essentially discrimination and you’d be able to appeal to the trust.

OP unless your condition is quite unstable, you seem to be having follow ups more often than necessary. Clearly there is an obvious reason for this....££££. I wonder if it's worth you challenging the clinic, and asking if the reviews can be done less frequently, and suggest that you may try and find a different clinic if not. They may want to keep your custom and agree to less frequent reviews.

Umm doesn’t this exactly illustrate what the programme was uncovering? The NHS sets the bar high for diagnosis because ADHD is a life long disability. It’s not the latest trendy MH diagnosis! He didn’t fit the NHS criteria, yet the people you paid said he did. Funny that!

I have been having follow up zoom calls with my psychiatrist every 6 weeks at a cost of £170. On top of that, to actually have the prescription written is £25 and the meds themselves are £95 so it is a huge cost for me.

Your psychiatrist has complete control over this.

The fact they charge £25 for writing the prescription is their choice.
They could waive it if you can't afford it.

Likewise the very frequent reviews which are completely unnecessary unless your symptoms are not under control and need constant tweaking of the meds.

You could reduce all these costs by having a conversation with them and drawing up a different treatment plan.

I disagree tbh.

Possibly many decades ago when there wasn't the awareness but in dc case it was the schools that first raised concerns and this was 15 years ago for my eldest. Obviously there will be some kids who will have slipped through the net but ADHD is so very disabling that it's difficult to imagine such large numbers get to middle age without some evidence of their difficulties on their medical history. It doesn't account for the tidal wave of people seeking a diagnosis since COVID.

Everyone has some traits that could be attributed to ADHD. It's the severity and the impact on their lives that then warrants a diagnosis. I'm convinced there is a growing number of adults who use Tik Tok videos and the like to self diagnose because its the in thing to have. In reality the reason they haven't been diagnosed before now because they haven't actually got it, evidenced by the fact that they have never been impacted in childhood.

I've seen it in my own social circle Menopausal women who are juggling too many plates and are struggling to cope. None of whom had difficulties earlier ( admitted) and who have had very productive, successful lives unencumbered by the nightmare that is real ADHD. People jumping on the ADHD bandwagon and seeking a diagnosis as the Holy Grail, taking away scarce resources from genuine sufferers.

I'm not for one moment saying this is the OP but it's disingenuous to claim its not happening because it is and its overloading the system to breaking point. Yes the NHS is a mess but some people are turning to private companies because they won't accept that they don't have it when told as much by CAMHS etc...it's diagnosis at all costs whether it's the right one or not.

Exactly.

Shared care agreements are only whilst the patient remains under the specialist’s supervision. If you are discharged (or stop seeing a private specialist) then the GP actually cannot keep prescribing the shared care meds.