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.

If your doing zoom op and taking stimulant medication who is monitoring your weight, blood pressure and pulse rate?

Waiting times depend on the area, I had mine recently and it was 18 months x

Like they say, "the money for is in the treatment not the cure" there are many people in the same situation but different illnesses, it's just how things are with the NHS right now and I'm not sure its going to get better any time soon! Not what you'd like to hear I know and it's not of any help, for that I'm sorry but do wish you and the rest of us luck!

Not sure what your point is, really?

Is it that people who have their needs met do not display symptoms?

Is it that when a person's needs are not being met (by themselves as adults or their caregivers as children) their ADHD symptoms manifest?

Is it that NHS 'interrogate' those claiming to have ADHD? (Personally, I read that as robust investigation by professionals who know their stuff and can spot a chancer when they see one .... )

Is it that commercial providers who are taking money directly from the person claiming to have ADHD (or their caregivers/indulgent parents) have a warm, fuzzy approach and tell them what they want to hear when presenting them with the bill?

Surely the answer is for the adult would-be ADHD patient (or their caregiver if a child) to ensure the person's other needs (emotional, dietary, sleep, exercise - as defined by you) continue to be met rather than zap them up on dangerous stimulants?

The reason you'd pay £2k is because you believe you know better than a qualified psychiatrist and you've found a warm, fuzzy person (with a ravenous eye on your bank account) to agree that, yes, indeed, you are right and the qualified professional is wrong. 😉

PS Hit me with stimulants and I'd be able to perform just about any feat you want of me .... 😂

@notmorezoom I see, thanks for clarifying 😊

Are you saying that ADHD can be treated purely by diet, exercise, sleep and meeting emotional needs?

You don't seem to know much about how stimulants work...

People can choose that though can't they? I think vast majority of people who suspect they have ADHD never seek diagnosis and even a lot of people with a diagnosis do not seek medication for it especially if they feel they can manage ok. It was hugely difficult for me to get through the NHS process. Absolute nightmare because I can't organise and they chucked me off the waiting list twice because of stupid reasons such as I was already recieving secondary care - I'd been offered a mindfulness group by my GP.... This meant it was a different NHS list I had to go on. I am autistic as well as have ADHD, and the whole process was so stressful and frustrating and unnecessarily confusing.
I am so glad I got through that actually because this place that won't give repeat prescriptions without an expensive review sounds like a scam. I think if the NHS one isn't fit for purpose, then we need protection against being scammed.

I think it's such a misconception that these ADHD drugs are given out willy nilly or that people haven't exhausted other methods before trying medication.
It's a choice. My middle son has NHS diagnosis, but didn't like the way it made him feel, and he didn't feel benefit and said it made him feel numb. He refused to try anything else. His choice. My eldest son takes it on days he goes to work or college. He doesn't on the weekend.
I take mine every day. I find it really hard to work out what I need to do, or think. It has really transformed my life. I now work full time after being a sahm for years. I still feel very ADHD because I have kept on a really tiny dose because I get side effects otherwise.
What I'm trying to say, is that while natural methods can be great, and exercise and fish oils etc, medication gets a bad rap, but I can think of a few people in my own family and circle that I bet would be able to sort their life out better if they got their diagnosis and some medication even just to see if it helps.
The very nature of ADHD makes the NHS system hard to navigate, now more than ever, and we are not known for our patience. If I had had the money, I would have absolutely wanted to go private tooo

I have to go to my pharmacy for readings and send it over with my prescription request

Hi all thanks for your replies. My mum and brother are also both diagnosed with ADHD and we all take the same medication. They were both diagnosed much earlier than I and are on shared care with the same GP. The GP refuses me now though because of these new regulations...

@Justintimeee the poster is saying if a qualified psychiatrist is saying you do not have ADHD, then perhaps you do not?
And stimulants help anyone perform tasks better. But should only be given to people with ADHD.

More info:
I liaise with a lady who has an '@nhs.net' email address to book in with my psychiatrist. She is the lady I send my prescription requests to etc.

I have googled my psychiatrist who is listed as working full time as a general adult psychiatrist within the NHS alongside his ADHD service yet is reluctant to help me get shared care... I am confused with how this all crosses over. I get that I went to his private clinic but he is an NHS psychiatrist so how is his diagnosis not valid?

It seems like they're both affiliated with the NHS yet nothing is happening with the GP

What do you mean? Nobody has said that to me at all. My GP refuses shared care from private psychiatrists and says I have to go on the waiting list to be assessed by the NHS even though the doctor who diagnosed me through his clinic also works for the NHS.

Lol robust my arse. The NHS takes on average nearly 10 years to diagnose bipolar for example. For exactly the reason @Whoopsmahoot said. There are of course some great psychiatrists in the NHS but they are constrained in how much they can really help by time, resources, the types of cases they most familiar with and bureaucracy. It’s an incredibly dismissive experience if you are not very obviously psychotic. This has been recognised as a massive problem and I don’t understand why people are resistant to recognising it’s a very similar experience for people with certain presentations of ADHD.

I've really no idea about how ADHD works. I was seeking clarification from the poster @Whoopsmahoot who stated when all those needs are met, ADHD does not manifest in that individual.

Perhaps @Whoopsmahoot could link us to a study that confirms her statement, unless her study was an incredibly biased point of view of one i.e. her own son?

Absolutely. The complete lack of empathy from some people is the thing I find shocking about Mumsnet. Just sheer spite for no reason.
My daughter aged out of CAMHS before she got a diagnosis, I have also struggled my whole life. Yes, often you can manage if you have to, but at the complete detriment of your mental health and it is just getting by, nobody should have to just get by, when they are capable of more.
Paying for a diagnosis does not mean someone who can't pay would be waiting for longer. If anything, it's one more person not adding to the NHS waiting list.
We haven't paid because our HA is refusing to diagnose or offer private shared care for adults with ADHD. But if it would get us help, I would absolutely go into debt.

Jesus wept.

I'm sorry that has been your particular experience.

My own experience was very different. I underwent a robust and lengthy assessment. It considered my entire personal and medical histories, was asked some challenging questions and given time to reflect on my responses etc. The end result was a diagnosis of C-PTSD rather than either of the other potential diagnoses that were in the frame at the outset. My local CMHT and GP have been very supportive on the rare occasion I've required mental health support since diagnosis. Not once during the process did I feel dismissed, nor did I ever present as psychotic - perhaps paranoid, scared, inattentive, forgetful, reluctant to engage with incredibly difficult issues etc. but never psychotic.

One of my brothers has ongoing (long-term) chronic mental health issues. His team have taken every possible effort to keep him stable and feeling valued despite those chronic difficulties. We, as a family, also have our part to play in enabling his stability and feeling valued.

I'm concluding from this thread mental health services, like just about every other arm of the NHS, is a postcode lottery.

Interesting- my son (he’s 24 now) has been convinced he has ADHD for years and was getting very depressed about it, as he knew it was affecting his life. We went in to see our NHS doctors a couple of times ( think the first time he was about 16) and they didn’t think he had it. At one point a couple of years ago he was VERY depressed and in desperation I went online and ended up paying a fortune for a consultation for him (online) He was diagnosed, we paid for the medication, and it was like suddenly my son was a different person! He was up in the mornings, blitzed his bedroom, bought a whiteboard and started making to-do lists! I know that if he’d carried on with the medication we were told that he could have got prescriptions from the NHS going forward. Ultimately he found there were side effects (lost his appetite and had trouble sleeping) and he came off it. He’s still better than he was, but at the time it did seem like a miracle cure.

My DH had the same. His GP quite candidly said that most NHS doctors believe private doctors will diagnose anyone with ADHD who tells them they think they have it, so they won’t take the diagnosis on board and prescribe the medicine

If you pay the money, pretty much anyone can get a diagnosis. Adults who convince themselves they have it have already done EVERY quiz online, know what questions will be asked and what the psychiatrist is looking for. They can absolutely fit themselves into the 'box' they need to.
And those private psychiatrists, especially those ADHS specialist 'clinics', often online, are making an absolute fortune now that everyone thinks they have ADHD. Then, once the cost becomes prohibitive, off they go to try and get NHS help and impacting those who have genuinely been diagnosed and not cut corners.
The horse has bolted so not sure there is an answer. I do know that it i probably very likely that young girls will be the ones who continue to be 'missed' because the focus, which was briefly on them when the understanding finally hit about how ADHD manifests in girls, is firmly on the adults wanting a diagnosis. And yes, everyone with a genuine NEED should be able to access care, but we all know there are many, many, who do have some kind of issue no doubt, who have diagnosed themselves with the easiest one to get a formal diagnosis in and are now working on nabbing that label. And those meds. Causing a whole other issue 🤷‍♀️

@WaitingForSunnyDaysAgain some people who get diagnosed privately will have ADHD. But how can a GP tell the genuine ones from those who do not have ADHD but effectively paid for their diagnosis? They can not. So many say they will only prescribe for those diagnosed through the NHS.

@WaitingForSunnyDaysAgain Which would be absolutely fine if you could get a diagnosis through the NHS. but you can't, unless you're happy to wait eleventybillion years.

It's a shambles and probably a false economy too. If the NHS recognised and treated these problems early, there would be a lot fewer mental health issues

Every six weeks is ridiculous - I’m assuming your titration period is finished and you are on a steady dose? My DS has to see the psychiatrist every 6 months - and he’s growing etc so the dosage can change. As long as the psychiatrist confirms the new dose on writing with the GP they are happy to prescribe, but it sounds as if we are lucky to have shared care agreed.
You need to push back on the six weekly schedule!

I work as a community pharmacist and pharmacies do not stockpile for private patients at all.
Brands of meds go out of stock from the manufacturer and the date for them to come back in can be months. We don't get told the date from the manufacturer when they will be back in stock hence the whole "we are unsure when it will be back in stock*.
And a general pharmacy will deal with less than 1 percent of private prescriptions. Pharmacies do not stock pile such medications as they are controlled drugs and have to be in controlled drug cabinets (which usually tend to be very small so no space to even stockpile)

Sounds like moving is your best option

But many of those young girls have become adults, who are now seeking diagnoses. The newer understanding of how ADHD affects girls has led to an increase in demand for care. The two adults I know with recent diagnoses are women.
ADHD isn't a new thing in children, we used to put kids who struggled into Borstal, then on into adult prisons. So many children were failed. We should know better now, yet many on Mumsnet do not. Even those of us who managed to stay out of trouble, have been limited in their aspirations and go through life as square pegs.
The comments about anyone can improve their lives with ADHD meds are just disgusting. Ties into the current government's push to label people with disabilities as drug seeking scroungers. Ironically my DS is on these type of meds for another condition. The side affects are awful.

The blind faith in the NHS is touching but extremely unwarranted when it comes to these things. My DD has been let down time and time again.