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.

“That's incredibly arrogant of a GP to say that! (Especially as GPs are pretty badly thought of by their peers in the medical profession...)”

That is an incredibly ignorant thing to say. I don’t know anybody who looks down on GPs (as one of their peers in healthcare). They have one of the most difficult jobs in the NHS (simultaneously getting lambasted for not referring cases then referring too many) with less and less resources whilst the right wing press has scapegoated them for central failings in the funding of health and social care. On top of that they receive some of the most abuse from patients (which you’re contributing to). No wonder more and more of them are leaving spreading those left even thinner. Do I think there are some poor GPs? Yes. But I could also point to some poor surgeons, geriatricians, psychiatrists (and waiters, teachers, lawyers, accountants, taxi drivers etc etc.)

The problem with private provision of ADHD care is that there are absolutely some unscrupulous providers out there (often where no actually GMC registered doctor is involved with the patients care at all). A blanket refusal of shared care from the private sector is easier than a GP trying to figure out the standard, quality and qualifications of each provider. When the GP prescribes the drug they are taking over the legal responsibility for any harm occurring - it’s their medical license on the line. Of course they want the reassurance that there’s ongoing input from a specialist in the area. Would you be happy to risk a career that you’ve spent 10+ years building up? The anger in this should be directed towards the government for its sustained underfunding of the healthcare system and creation of an increasingly hostile working environment/doing nothing about staff retention leading to long waiting lists becoming even longer.

I really do sympathise with you OP - I get how frustrating it is and that it seems unfair as sounds like the medications have been helpful to you. The only thing I can suggest is to get on the NHS waiting list (apologies if you are already and I’ve missed that!). You could also try other practices in the area that you are eligible to register with to see if they have a different set up for shared care in this area (as some posters have mentioned their practice has a list of approved private providers).

Yes I've seen this as well ,that NHS won't sort u out if private op abroad goeswrong

Shared care between the NHS and the private sector is complex, GPs don't have to do it and some don't. You could try ringing other local practices to see if they will, but you'd still need a 6 monthly review. Make sure you're on the NHS waiting list.

I didn’t realise other places within the UK had to pay for their prescriptions, they’re free in Scotland. That’s completely awful, how does anyone afford that?

All this is bollocks.

ADHD drugs aren’t smarties. They can have serious side effects, which is why they are SCA drugs. This means that in order for a GP to prescribe them, they need the support of an expert, (psychiatrist) who has the experience and knowledge to take clinical responsibility for prescribing such drugs. GPs are generalists, and are therefore not qualified to take full responsibility for more specialist drugs.
Before SCAs, patients had to go to hospital for their drugs every month. SCAs made that unnecessary.

The massive explosion of private ADHD clinics clearly presents a problem. As shown by the Panorama programme, some of them are dodgy, and the patients don’t even see a psychiatrist. It therefore becomes harder for the people making the decisions about SCAs to know if it’s safe for GPs to take instruction from these clinics. So currently most areas have a blanket rule of not prescribing on the say-so of private clinics for ADHD drugs.

Imagine you work for an airline and you’re in charge of employing pilots to fly your planes. You have a list of pilot training programmes that are registered and qualified, and you get your pilots from there. Then suddenly lots of other flying schools appear. They have shiny letterheads and certificates, but you’ve never heard of them, and you don’t know what their teaching programmes consist of. Would you happily start emptying pilots from there too?

My son has ADHD and was diagnosed and is medicated through the NHS. Only he (and many many others around the country) haven't been able to get their meds for months now. According to my GP, this is due to a huge upsurge in private doctors handing out diagnoses and medication, which has resulted in a shortage of meds nationwide.

So while I am kind of sympathetic, it's still also very frustrating for those of us who haven't got a private diagnosis, as apparently the meds are there if you're paying for them!

This bears repeating. Most people, both ND and NT, will get alot more done in their day with a well titrated dose of stimulants.
If you're at all uncertain about an ADHD diagnosis DON'T let any clinician convince you a positive response to prescribed meds is confirmation of diagnosis - get a second opinion.

It's because many private diagnoses are meaningless and not worth the paper they are written on.

I know someone who was repeatedly refused by the NHS who chose to go private and was diagnosed after a 20 minute phone call.

These are controlled drugs that can have serious side effects. I'm not surprised the NHS questions the validity of some private firms.

ADHD, to my knowledge, must have symptoms present from childhood. They do not happen overnight. I would imagine in most cases this would evidence a medical history at the GP which warrants referral to CAMHS. As happened with my dc. Ours were done on the NHS within 4 months. I realise it's a postcode lottery but there is choose and book. I would seek an NHS diagnosis tbh.

To be fair the OP is quoting the cost of a private prescription (and I presume a private prescription in Scotland etc would be very similar in cost). An NHS prescription in England is £9.65 regardless of drug (with certain conditions being exempt from fees and exceptions for those over 60, who are pregnant, receive certain benefits etc.). Pre-payment certificates also available where you pay around £110 for the year (shorter options are available) which covers all prescriptions within that time frame.

We are in Essex and have the same issue re: refusal of shared care. We are paying £30 a fortnight for DS's meds. We went with a private diagnosis because there's a 2-year wait here and DS was in crisis. The diagnostic process was done by a qualified psychiatrist with 20 years experience and and was compliant with NICE guidelines used by the NHS, but NHS won't accept it unless DS goes through exactly same diagnostic process administered by NHS doctor. (To me this seems like completely unnecessary duplication and waste of NHS resources and makes accessing care for our son much harder.) Basically the NHS have got us by the short and curlies. It's a crappy policy IMO.

No real advice OP, but really sympathise with your predicament. 💐

The OP has been diagnosed by a psychiatrist whose conduct and practice are regulated by the GMC.

@Justintimeee 6 weekly check ups are excessive, I would start by contacting the clinic you were diagnosed by and asking them to decrease the frequency of the check ups. NICE guidelines recommend 6 months between check ups once the medication dosage is stable.

https://www.bucksformulary.nhs.uk/docs/Guideline_796FM.pdf

The second thing you need to do is contact the practice manager of your GPs, explain that you have been diagnosed by a psychiatrist whose conduct is already regulated by the GMC and that the NHS rules forbid you to be treated differently due to seeking private treatment. There is good advice here.

https://www.adhdadult.uk/shared-care/#:~:text=A%20GP%20is%20fully%20entitled,prescribing%20and%20any%20necessary%20monitoring.

One of my students has gone down this route as the waiting list at out CAMHS is 2+ years. His appointment is in November!

Yes because the nhs is not set up for this private interface. And the doctors are liable if there is some sort of problem eg with the meds if they turned out to be completely unsuitable. They have to verify it independently and can't just accept the private referral at face value because the privates are not insured in the same way as GP and consultants etc.
It's not the NHS fault!

Dc was diagnosed privately around 18 months ago. They'd been on the waiting list with CAMHS but aged out. The adult waiting list around here was a 3.5 year minimum at that time (pretty sure it hasn't improved!). They were seen privately, diagnosed and prescribed medication. Same sorts of costs as you @Justintimeee but after around 9 months or so when medication was optimised we were able to get GP to prescribe on shared care. Afaik dc was still on the NHS waiting list so maybe that made a difference to accepting shared care?

Eta no it's not fair that you should have to pay that much when the only alternative is waiting literally years longer for diagnosis/treatment.

We have been through this recently with 20 year old DS who was assessed (and diagnosed) with inattentive ADD. Before we went through the process he went to the GP to discuss how to go about this and they agreed that if the diagnosis was done privately by a NHS registered psychiatrist they would agree to prescribe. We haven't been down that road yet but it's getting to the stage that medication is what he'll be trying. This was all around the time though that Panorama did the expose on people being "diagnosed" on the basis of a 20 minute Zoom call with someone with no qualifications.

I would go back and speak to your GP about it. See what your options are as this is an ongoing thing.

Best thing to do is make an appointment with Gp and ask for a nhs referral we are waiting fit psychuk all nhs. We looked at private but was worried about what is happening to you happening to us. Bf took meds from childhood then stopped at 17 and went of rails. Trying to calm him and get him of weed and be able to keep a job without fronting the manager. Roll on when he starts his. I really do feel for u. Maybe change gp practitioners? But approach the other local GPS first xx

Thanks for your responses everyone. I am more annoyed that I keep needing to have these expensive follow ups to be allowed medication... I am happy to pay for my meds and prescription but the excessive follow ups are just too much and so expensive. Staying private, does anyone know of any ADHD clinics that don't require regular follow ups?

The issue is not surely the cost of the drugs (only) but the need to have a check up every 6 weeks.

Is that necessary?

What changes so much in 6 weeks? Is a review so often the norm?

There are many cases where GPs are happy to provide NHS prescriptions when recommended by a consultant who works privately.

The menopause forum here is full of women who've had a private appt , that dr has written to their GP and they get their HRT as an NHS prescription )if that's what those women want. Some stay with their private dr. and get private prescriptions.)

Yes, we are paying £160 a prescription for ds's very severe acne while waiting on a nhs wait list for dermatology that we have been told could be 18 months.

I think it is correct you need to see an nhs dr in the appropriate speciality. It is the wait times that are the issue.

What you're experiencing is the bit of psychiatry based services that most people just aren't aware of in the NHS.

If you go to NHS psychiatry services exactly the same happens except you don't have to pay - but the GP won't take over from an NHS secondary care service for some medications without specific instructions.

I have this with my MH meds, my GP will only prescribe per the psychiatrist's instructions and I have to be referred back to them for any changes needed. Initially my GP also hesitated about the initial prescription instruction because it is off-label and no one had ever been prescribed it within my area for my condition (it is a well established but off label indication!).

They aren't under any obligation to take over shared care and I think they are right to be cautious and put in blanket rules. They have personal liability. For instance, in my area if you see a psych privately who also works in the local NHS service they'll take on shared care but they won't touch the online providers.

Xd posts @Justintimeee

I have a feeling your dr is taking advantage.

Why don't you talk to them and discuss this? Say the cost is prohibitive and ask why you need so many reviews.

It's not normal to have reviews that often for any meds unless they are really powerful drugs for example for cancer treatment.

I tried this - used the local NHS psychiatrist's private practice - that's also a no for a lot of GPs. MY GP requires that you are monitored under the NHS meaning you need an NHS diagnosis. Not just for ADHD but all conditions - eg if private consultant prescribed drugs for endometriosis or a heart condition, they would not take over.
I knew this when I got an ADHD diagnosis and accepted the drugs would cost £120 per month plus appointments to monitor. Except there are no drugs available. When I am not on medication, I get overwhelmed and have been misdiagnosed with depression in the past. Lack of medication does lead to serious MH issues but anti depressants don't help.

I had private diagnosis aged mid 50s just after lockdowns. Shifted to shared care and GP prescribed drugs. At last psych review was told that my borough (Bedfordshire) no longer offers shared care and if I brought a private diagnosis to them now I would be turned down for shared care as would everyone with a private diagnosis. I'm vvvv lucky - or would be, if I could actually get hold of my medication!