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.

Obviously, l didn’t read the whole thread 🙄 but when l went for lVF privately (and saved NHS money) l was rejected by GP when asked to have blood thinning injections prescribed (so l don’t pay for that as well) but encouraged to buy Rennie instead of having it free, needles to say, l told her she can buy meds herself and l’ll use my free prescription for the duration of my pregnancy… but if you choose to go private, well then you got to pay for it…

@WriterOfWrongs I’m in Wales, it was a Community Paediatrician. The diagnosis letter I then got was also so poorly written.

As part of the (very non rigorous) process we experienced, my DS also had an ADOS with a SALT, virtually, who asked if he had excessive movement such as leg swinging “because obviously on Zoom I can’t see below table height”. The whole experience was shambolic. I haven’t and wouldn’t complain because we got the outcome we wanted (although I have since requested follow up to trial medication and the paediatrician he was under has left, and the wait to see their replacement is huge).

My DS also had a motor assessment with a group of OTs for DCD, now THAT was thorough and rigorous, a proper assessment.

So interesting about the smoking! DH used to be a heavy smoker, he’s all or nothing and even though he quit 10+ years ago, if he were to have one drag now he’d be back on 20 a day. It’s clear that a large proportion of his family are ND, lots and lots of smokers!

I think this is the same in other areas. Impact for my adult DD's medication because she can't get seen by NHS for another year.

Try another NHS GP, some of them will accept a shared care agreement from a private clinic.
It’s the same story for my university student child- a huge cost to us in the university town where the GP has said they would need to be referred to the NHS for a diagnosis and it would take years.
Our home GP practice was perfectly happy to prescribe on the NHS. Without the medication my child would have been out of school due to problems and the diagnosis and medication was transformational, they are now happy and studying Mathematics at uni and . It makes my blood boil!

in my own experience anything to do with Mental Health as far as the NHS is concerned is pretty abysmal! I was told I should have been referred to a psychiatrist but there wasn’t one available under the NHS. My late husband was put in a dementia unit when he should been in a rehabilitation unit post severe head trauma. Unless you can afford private healthcare, forget it.

Diagnosis is often much less clear and objective in neurodiversity illnesses, especially so when there is a spectrum. ADHD wasn't even mentioned when I studied psychology in the sixties. It's not an area I've followed since, but I believe it is still a contentious diagnosis.

Like so many neurodiversities, it was first recognised as an illness by the American Psychological Association of private practitioners. Is it not sensible for a public health system to be cautious about accepting diagnosis and prescribed treatment for such illness, from private practitioners? Private practitioners have a clear interest in diagnosing illness whenever they can. If customers stay with them, they've generated an income stream: if the customers goes elsewhere, it costs them nothing. Public health doctors have no such incentive, rather the contrary.

Get NHS advice - go to your GP immediately. You've gone to a private doctor who has prescribed drugs that make you feel better. If your ADHD condition is genuine - an NHS doctor can equally get a diagnosis for you. What meds are you on? I love Diazapam, formerly known as Valium. It just flips a switch in your brain to remove all panic, anxiety, fear, but you remain clear and sharp thinking. I seriously wish I could spend my entire life taking it. However, as with all drugs, the more and the longer you take them, the less biological impact they have. So there are drugs that make you feel in control. But will you become addicted? Will they still work in two years? Just what drugs are you on? Get a second opinion.

DS 21 has been on the waiting list for ADHD assessment for 2 years and 1 month now.
He has also been waiting 2 years and 1 month for his first session of DBT therapy for Borderline Personality Disorder. He has just been advised to expect his 1st appointment mid 2025, so that will be a 3.5 year wait.
In the mean time he is depressed, psychotic, unable to work or study. His younger brother is traumatised by his older brothers behaviour and is on beta blockers and anti depressants himself, aged 15. I am receiving counselling.
Please don't use your money to jump the queue ahead of us. We are desperate.

I get why this happens as the NHS will want to be comfortable with the diagnosis themselves but its frustrating as professionals have a duty to diagnose accurately so surely it should be respected? If there are concerns about the legitimacy of the professional concerned they should be reported to their professional body. Presumably concerns aren't that strong in the community else they would be?

I'm on ADHD meds after exercising right to choose. My GP will accept patients back after titration. I think the clinic i was diagnosed through has to meet certain NHS standards etc.

Wintery that is awful. Can he access adult mental health crisis team if he is psychotic? It sounds as though there is another mental health disorder at play. If he has a history of psychosis then ADHD medication may not be suitable for him anyway. I understand he may still want the diagnosis but there won’t be a magic bullet to ‘cure’ him.

Yes @Grandmasswag it's really shit. My general point is that there are many lives being ruined by NHS waiting lists- and seeing those who can afford private diagnosis and a few private prescriptions then moan about not being able to jump the queue for the NHS really pisses me off.
(My son is in the 'care' of adult MH services. He is on loads of medication. He took 6 overdoses in 5 weeks last year- and got 3 home visits from the Crisis Team- then it's back to community care (me) and waiting waiting waiting.)

Winter have you tried contacting the ADHD diagnostic service to request being moved up the list. In our area they will leap frog people up the list in cases like yours.

Going private and wanting the nhs to fund the prescription doesn’t impact the diagnosis waiting list.

I think his undiagnosed ADHD is really significant in his mental health. It invokes a whole host of negative emotions which he then can't regulate which tips over into a psychotic break. AdHD meds might not help but, on the other hand, but they could really be the key to his difficulties- because the diazepam, temazepam, lorazepam, mirtazapine, pregabalin, haloperidol etc etc he's on now don't seem to help enough....

I hear you re adult services. It’s shocking. I have 2 going through similar. Then they start to self medicate.

I hear you re adult services. It’s shocking. I have 2 going through similar. Then they start to self medicate.

@AloeNora we contact all the services every few months to see where he is on the waiting lists- and his (NHS) psychiatrist phones too. It doesn't seem to help.
Thanks @AloeNora and @Grandmasswag for your replies.

Yes- self medicate and self harm. It's a huge problem

Have you emailed pointing out the wait is making him deteriorate and point out the vulnerabilities. He surely should be leapfrogged. I think you need to put in a PAlS complaint too. They’re rubbish but getting it documented is better than phone calls in my experience. Polite but firm asking pertinent questions. Young people like ours need an NHS diagnosis not private. The system is fragmented as it is.

The thing is though @AloeNora while I really feel for @Wintery it’s clear that her son must have co-morbidities even if he does have ADHD. Psychosis is not a trait of ADHD and it’s not a common co-morbidity. Only about 10% of people with ADHD experience psychosis. And sometimes the psychosis is triggered by ADHD medication.

I recently asked for shared care for my DS6. The GP refused on the grounds that if we were in crisis, they aren't specialist in his medication but the private ADHD doctor is. I'm happy with this explanation.

His meds (3 of them) cost me £55 a month. Asda and Boots are always the cheapest.

But he’s not on adhd medication and undiagnosed adhd can be catastrophic. Psychosis can be caused by some forms of self medication. He needs to go through the diagnosis process to rule it out surely or support it, his psych clearly thinks so. There needs to be more cohesion between services and people like this should be at the top of the list with expertise across services then working together for the best outcome.

Yes obviously he needs to go through the process.

But to blame psychosis on undiagnosed ADHD is simplistic. It may be one of the factors and diagnosing it may be key in getting him on the right medication treatment plan, but the unfortunate truth is that with psychosis and taking other medication, there’s a strong statistical chance that ADHD meds may not be advised or may make him worse.

I can’t advise and I suspect this has either been tried or suggested before… but are there any charities out there that could advise you? Help with funding etc?
it seems very odd that you’ve got to spend out money you don’t have…. Can you ask the place itself if they have a scheme to help people who simply can’t afford it?!…. How long have you been diagnosed? Could you apply for PIP which would help you financially ? You need someone with experience to help you fill out the PIP application and it’s worth booking an appointment with the CAB at the same time as calling up and requesting a PIP form.

They don’t have to be a specialist.
my daughter has type 1 diabetes and is seen by specialist 4 times a year…. However they send a letter to her GP telling them what to prescribe and they just prescribe it! A specialist in ADHD could do the same, for some reason they just don’t. (Maybe funding??) but his explanation was just fobbing you off. GP’s aren’t specialists in anything, but yet they prescribe heart medication, cancer meds etc everyday because the actual specialists tell them to.