Can anyone advise me about going private for ADHD medication?

[ADHDdiagnosis]

I’d love some advice. I have just been diagnosed by a psychiatrist and for this assessment I waited over two years.
im feeling quite sad and still processing what this means for me and what I’ve struggled with over the years which I’m now needing to look at through a different lens.
although it now seems completely obvious that I’ve always had this -and that’s why I asked for the assessment- I still feel quite shaken by the confirmed diagnosis.
the very sad part of this is that I am now 60 years old and my relationships and finances and addictions - every aspect of my life really, has been affected by my neurological condition. It’s a lot to mourn in a way.

What I’m asking about in this post is should I now go private? - I have been told I’m a suitable case to try medication. And I’m keen to do this because I have so many difficulties and am struggling massively in day to day life. But I’m told the wait list for titration is 10 months. This is with the same company I had the assessment with. Psychiatry First. Their wait list for assessment they state as 52 weeks. I was on the list for two and a half years at least.

in the recent years I have had to pay privately for a lot of my healthcare and I am not wealthy by any means. But I’ve been unwell and had no choice.

if I spend money now on this condition am I wasting money I need for my family? Has anyone been in this position? Such a late diagnosis and long wait times?

do you think 10 months is ok to wait? Could it be quicker on the nhs in any way I don’t know?

can anyone tell me if they went private were they helped quickly and can I ask the approximate costs? I’m a bit shaken up. And also already spending a lot of money due to bad choices and I’m overwhelmed.

Anyone at all use these meds and can give me advice or share experience?

I'm not sure if this advice will apply elsewhere or was specific to where my friend was based & the services at the time; he had a private ADHD assesment and paid privately for meds, it was a lot of money (I can't recall exactly but I'm sure it was in the region of £200-300pcm every month) When his circumstances later changed and he was struggling to afford it, he had a real battle to get it transferred to the NHS. It wasn't that his diagnosis wasn't recognised - the provider he saw privately also does NHS, there was no dispute over the prescription being needed - it was about it being different systems/pathways.

Honestly if you can wait I'd recommend doing so, you could consider seeing if there's anything else you could look at privately that would be more short term such as a counsellor/psychologist who specialises in supporting people with ADHD? That could help you to start coming to terms with the grief for what could have been different, before you try meds.

Agreed. I would see the potential 10 months as a drop in the ocean of a lifetime tbh, as getting the NHS to pick it up later may well be a battle/not possible.

I paid privately but was paying £150 a month and couldn't afford it. The meds stopped helping after 6 weeks ago so I felt like I was wasting my money. If I was you I would wait the 10 months

If you go private the nhs often won't accept the diagnosis so you'd be unlikely to get the medication prescribed via them at a reduced cost. Just something to consider ☺️

Thank you so much everyone. This is very helpful. It’s exactly the advice I need. I will have to wait I think.

i know that if i choose to opt for private care I will need to withdraw myself from the nhs list. So I could end up not being able to afford help in the future.

I suppose what’s particularly concerning me is the thought that I could be one of these people who have great benefit from the meds. And if that was the case it’s sad to waste another year without it. But I may be not seeing this clearly right now

I waited 11 months for tritation on the NHS. It was worth the wait IMO as it gave me space to come to terms with my diagnosis and to think about whether I wanted to give meds a go. I didn't initially but then came round to the idea and am now just over a month in. However my meds review is not for another 8 months! I can email in the meantime.

I used Psychiatry UK under the right to choose. It took a long time to be seen by a psychiatrist and was over zoom. Maybe a year to a year and a half. She was amazing also Dx with Autism, but am awaiting on that. With the meds as I am over 40 they were cautious, I had to have an ECG (no charge) and they sent me out a BP monitor (again, no charge). Weirdly I then went to a prescribing dr. This is just how they work. She was very flexible as I worry about the affects of meds on your heart. I am actually a member of an AuADHD society that are having a lecture on this in a week or so PM if you want the link. They can send you a replay, again no charge if you can't make it. I donate to this organisation, but there is zero pressure to they just try to spread info about Autism and ADHD.

Anyway I digress after waiting for the prescribing Dr I would say maybe 2 years in total. I received my medication, they asked I check my BP and pulse which I had to submit online. After the initial titration I started on maybe 20mg and went up over a month or two to 70mg. I assume based on body weight not sure, it always strikes me as odd how human doses are done by person,animal.ones by weight. Anyway after the first 6 weeks I was due more medication and the lady in charge of titration just asked if I would like to continue on the 70mg I said yes and this has been the case ever since. The only bad thing I would say is take it as soon as you wake up or it keeps you awake. Apparently not everyone, but did with me. The effect was life changing I honestly cannot tell you. I can now write a to do list and complete it. I used to function when I had to eg work, my home life was chaos; procrastination, analysis paralysis,doom scrolling, an unhealthy relatio ship with alcohol, food and money. My house was a tip, honestly we did not have friends as I could not let anyone see how bad the house was. Just Chaos. I had so many clothes, so many everything it was impacting DH as well as he had to live with me. I had no organisation which was weird as, when I was a small child I was super organised. You can massively notice the difference in that area, I also am a lot calmer. Which seems counter intuitive as the medication is a stimulant. I would say stick with it if you are using the NHS. I too have heard people having trouble getting NHS care after receiving a private diagnosis. My provider Psychiatry UK have always been upfront about the wait times which are shocking. Once you are 'on their books' things run very smoothly. Just last week it was my birthday, my DH bought me a ££££ Tiffany ring. He phoned me do you like your ring. What ring, it had been signed for by someone else hours earlier. Thankfully it turned up 6 hours later, dropped on the door, followed up by a stressed FedX delivery person. I think they must have contacted whoever they gave it to, and they did the right thing perhaps with prompting. Tiffany rang me today trying to sell me another ring, I liked. I explained what had happened and said I would not be using them again,not even an apology. With this company they use DPD and this is the clever bit send you a numerical code so parcels don't go missing. They give you a 2 hr time slot can get delivered to work or home and can choose weekdays, weekends or both . I must say it is not all sunshine and roses, once I got the medication sorted I grieved for the years and years wasted when I knew something was not right. I remember telling my Mum when I was about 7 she said I was daydreaming. Not her fault, I lived a life of torment I battled addiction, eating disorders, had very little social interaction maybe 2 friends and DH.

Life is a lot better now, I feel a lot more worthy and useful and I have my shit together a lot more. I even manage a diary after deleting the one on my phone which had every single thing you could think of entered. Now I just use a paper one. My advice would be stick with the NHS it was a long wait, but so worth it. I think my age requiring me to have an ECG delayed the process by a few months. I dont know how it works in other areas to be honest, I am in the SE. My GP initially prescribed me antidepressants which did nothing, I actually asked for them as I was not coping,she also sent me for 6 sessions of counselling again free on the NHS. It was the psychiatrist who flagged the possible ADHD, Autism. She feed back to my GP who asked me to fill out a screening questionnaire and recommended I use the Right to Choose as to avoid even worse waiting times, she gave me a form I think and here we are. Like I said earlier I would 100% go the way I did again, but do be prepared for a mourning angry period. You sort of see all these things that went wrong and cry for the girl that no one knew what was wrong with. Don't look back in anger it's not worth it. Final point is that my DS boys, both were diagnosed with ADHD early. They just never thought girls who didn't go around being violent, who were not hyperactive could have it. A diagnosis explains a lot of things and helps you realise it wasn't all your fault. I was picked out in primary school as we had to do an IQ test. I think it was a government thing, I went to a Catholic school. The teacher could barely hide her shock that I registered as I was quite, shy at school even though attractive, (I was scouted by a big modelling agency in my teens), I was never part of the cool crew. I was immature, really bad at communication, still am, but I don't care anymore.

I wish you the best on your journey and thinking about it I don't think anything would stop you from going down the right to choose NHS pathway then if you got fed up going private. Do be prepared for the NHS to delay medication if you go down the private route

I know we have no patience, but honestly see you GP. DO the forms go for the ECG then try not to think about it. So worth it and in my case they have completely kept to their word re waiting times. You still hopefully have at least 25 years of life left, dont think you are too old.

You have nothing to loose and everything to gain. Just get to grips there will be a long wait, try to.keep it out of your mind once you have done everything they ask. Remember the date say 2 years from now, and if you experience what I did, your life will change dramatically. Wishing you all the best. We were the ones that slipped through the radar, older females. The NHS now admits the condition of massively underdiagnosed in our white, female, older, semi functioning demographic. Just because we didn't throw things at the teacher or set fire to the school. Be kind to yourself. Feel free to PM me.

Why would you need to remove yourself from the NHS list?

I did the titration with a private dr, been on meds now since Sept 24. My dr has done a
shared care agreement with the NHS GP -
which was accepted.

This should not be the case.
many private clinics are well respected and also work for the NHS. However the issue is whether your GP will accept shared care with the psychiatrist and whether the OP can afford to fund annual / 6 monthly check ups in future.
In the meantime titration can be expensive and a lengthy process. I ran out of money so am a bit stuck at the moment! However with my kids the private psychiatrist is moving at pace to do shared care with the
GP. And that is going much more smoothly. Whether we will ever be able to transfer oversight to CAMHS is another question as it doesn’t even have a waiting list because they are closed to all except those in crisis.

for the OP I’d recommend waiting for titration on the NHS so that you have that continuity of care. But be patient!!!!

It’s psychiatry Uk I’m with. They said I could go private with them but I would need to withdraw from NHS waiting list. Close that down and then go private with them

I’d check that with your GP. I’ve heard of others going private but staying on the nhs list and then when they come to the top of the list their care is transferred from private to nhs

or ask PUK when they can transfer your care to the NHS. be honest and Explain you cannot afford to be stuck paying them every year for the rest of your days.

Be warned that many GPs are being advised not to do shared care even with NHS patients. My dc are NHS diagnosed and had the letter that our GP will no longer be doing shared cared for any ADHD meds following county and national advice.That’s ok for us as they’re NHS diagnosed so the NHS specialist ADHD dept will now take over with their NHS prescriptions ( thus making the wait for psychs to diagnose even longer) but those privately diagnosed will need to get their meds from their private provider which will be more expensive.

I wouldn’t come off an NHS wait list.

@ADHDdiagnosis if you’re saying you are eligible for nhs titration in 10 months but they can titrate privately in the mean time then yes I would absolutely go for that. We have done exactly this for my child.

If you mean you’re relying on your gp accepting shared care in 10 months then unless they’ve already said they will (and nothing changes in the meantime) then they probably won’t

If you mean you’re with an assessment provider on right to choose where the provider has an nhs contract such that when the gp refuses shared care they can keep prescribing for you whilst charging the icb directly for the prescriptions, I would just check that titrating privately in the meantime won’t disrupt the timeline and transfer to nhs

If you mean you’d have to go elsewhere for private titration you’d need to check whether the new place would accept your existing diagnosis, if not it wouldn’t be worth it as you’d need to do the whole assessment process again and pay for it

I just booked with CARE ADHD for titration only privately. It is much cheaper than other places around 599 for the whole titration package plus you would pay for your meds separately. They then charge 20 a month after for writing prescription.+meds. also its 129 for follow up appointments. Waiting list about 10 weeks at the moment. I am hoping that GP will take on shared care after and it would be NHS prices but if not, I think I would be able to afford £130 or so a month and if it truly help with adhd symptoms that would be amazing.

Thank you so much everyone. I’ve tried to take all this in and make some sense of where I am.

to be honest this diagnosis has shaken me up. I feel very fragile and destabilised.

I will call the psychiatry Uk company again next week and ask them to explain again what’s the situation with private titration.

im so keen to start meds. The idea that I could find something to make a difference to my life is just so tantalising. I’ve self medicated for most of my life and to think I have an actual disability. It’s a lot to take in.

What kind of drugs have people been prescribed and how long did they take to have an effect? Is it instant?
is shared care something the gp needs to agree? If not would I get prescription from psychiatry uk?

I don't think this is always the case, I believe a private diagnosis may sometimes be accepted by NHS

Yes, they need to agree. Mine don't accept it, hence waiting for NHS.

I take Lisdexamfetamine, called Elvanse in this country. No, the effects weren't totally immediate, they crept up and then I realised how different I was. I'll.come back to this with more time

it was my NHS GP who got me on the waiting list with psychiatry uk in 2023. Then finally I got my assessment last week.
the doctor said very good idea to take meds. So she put me on the waiting list for titration but said it would be 3-4 months. Then when I looked up times it said 10 months.
and I’m 60 now. So I need ecg etc. and blood pressure.

im reeling a bit because I’m thinking so much about what this means for me. My life has been extremely hard. Mostly alone. Facing battles. Addictions. No close relationships. Out of control environment. Everything a tip around me. Over sensitive. Rejection flooring me. Can’t cope with stress. Self medicated. Problems in every aspect of my life.

and im thinking now what if I could get help? Am I too old? Are patterns set. Could I get motivation in my life?

sp waiting now im thinking surely i should prioritise my health and try privately? But it looks like waiting for nhs is probably the sensible and less impulsive option. It’s all really knocked me

Ask psychiatry uk exactly this:

what happens if your gp refuses shared care once psychiatry uk have titrated you

if they say you would need to continue to pay then if you don’t want to do this you need to start hunting to see if there’s anywhere that’s able to accept your psychiatry uk diagnosis and then prescribe by charging your icb (or whatever it’s now called)

Ask your gp exactly this: will they accept shared care with psychiatry uk following a diagnosis on right to choose referral

If they say they don’t then ask them that if you are added back to the adult nhs medication review list once psychiatry uk have titrated you, what is the wait (we’ve waited 2 years so far😳)

Ok @ADHDdiagnosis medication isn’t a cure all and it can have side effects but for many/most people it will significantly improve some symptoms. For some it’s most or all of their symptoms.

You shouldn’t expect any initial effect as they have to start you on a low starter dose to get your body used to it

You might not be suited to the first second or even third medication you try, don’t be disheartened though.

It’s less about “learned habits” though, so do t worry about this or about having left it so late. ADHD is a physical neurological condition. Sure, with some very specialist adhd therapies you may gain a little control over some areas, however I personally dont think anyone with adhd will see significant improvements with therapy alone.

OP there was an interesting segment on BBC Radio 4 You and Yours programme last week about exactly this issue. It is stil available on BBC Sounds if you are interested.

Basically, GPs are being advised to no accept Shared Care agreements. Even some of those SCA previously accepted are now being terminated.

So, I would advise only to go down the private route if you can afford ongoing medication costs. If not, it might be prudent to wait for NHS (as frustrating as that will be).

I went with PUK years ago before the big rush and my GP does shared care.

Honestly it's like £200 a year for the meds review annually. If I want to change my meds I have to pay to titrate again. I personally would stick it out and stay with NHS in your situation.

You could try and antidepressant for six months like escitalopram or vortioxetine as they are meant to help with focus and motivation. Also there is some evidence that a mediterranean diet helps adhd symptoms. Adhd medication isn't a magic Bullet so do be realistic. For me it helps me start things but I still need to direct my focus, and no meds will make me do something I don't want to - I still need strategies. You may finding some adhd books or podcasts helpful in the meantime.

We went private for our DS.
The diagnosis (in 2019) was quite a short wait and was in the £700s.
A low dose of short acting medication cost about £30 a month (but again this was for a small child).
Titration (phone) appointments cost about £100.
We remained on the NHS waiting list and now have an NHS diagnosis, and care is shared between DS paediatrician (he has epilepsy as well) and the GP.