To ask for help re adhd meds

[Behappyandbehave]

My dd (20) has just being diagnosed through right to choose on nhs. Unfortunately this was with a private clinic that doesn't include titration. So for her to start meds we need to pay privately. Or wait for a never ending nhs appointment for diagnosis to come through.
It seems to be a minefield of which medication will suit her. I know they are the experts and will suggest what they think suits her but I'm still worried about negative side effects.
She has in the past suffered migraines and all meds say headaches can occur.
She's just come off sertraline and is fairly settled now without it but has previously had anxiety and depression.
She's also overweight and unmotivated to do anything about despite this being the main thing that upsets her.
She won't be in a relationship with anyone and ignores calls/texts from friends alot.
She is impulsive and takes risks, talks too much etc etc.
Really unsure whether she needs stimulants or non stimulants.
Would really appreciate any advice and other's experiences. Just want to get this right for her and help her improve her life. Not to mention the fact that each appointment is going to be around £250 and meds and prescription all extra!

ADHD is a very complex condition and I don't think a random person on the internet can make a better recommendation than a specialist with access to her medical notes. They are trained to consider co-morbidities. Just because medication states side effects, it doesn't mean those are going to occur so try not to worry ahead of time.

I completely understand your concern OP.

Unfortunately in my experience (my own and other people with adhd) med titration does seem to be an art not a science and very much is a case of trail an error to work out the best for an individual. Then once you've decided which one to go with, you need to work out the correct dose, and which formulation in terms of release profile. This does not appear to correlate to anything tangible like gender, size, weight, age etc..

So it can be a drawn out and expensive process. In addition whilst undergoing private titration it is likely she will have to pay for the meds too- some of which are horrifically expensive.

Headaches are a listed side effect but I haven't found it an issue and I haven't heard of it being one for others. I do think though, that the meds often reduce appetite (until they wear off), and sleep (again only until they wear off), and many of us aren't great at remembering to stay hydrated. So it can be these things, that contribute to a headache when adjusting to meds.

One thing to bear in mind is that in general once a stimulant med has kicked in (which is same day, within a relatively short time frame) you straight away have an idea of whether it is having a beneficial effect. That's not the case with non stimulants which only take effect after weeks or months- in that sense working out of a particular med has potential to help is often easier with stimulants.

Similarly stimulant med effects wear off within a short time frame (depending on their release profile). So in general most of us on stimulants go to bed without being medicated and any issues would therefore wear off).

Many of the issues you mention are symptomatic of adhd, rather than a choice or something she is able to change in the way a neurotypical person might expect.

Hope that helps a bit.

You don't typically get to choose which exact meds to start on even privately there are guidelines that have to be followed starting with stimulants. I titrated privately, my daughter through the nhs. We both followed the same paths until the right medications were found. Both of us have settled on different medications and doses, I'm actually on a combination of two and it took 6 months of private prescriptions to get there costing £280pm (due to being on two medications) my gp now has taken shared care on but I still have to pay a yearly fee to my private provider for access to them.

If you can afford or access the GeneSight test, then that will help with a starting place as it tests for the genes that control the amount of specific liver enzymes you have which break down a load of drugs (ADHD included). The speed which you break them down helps determine which ones will suit you best.

In brief, the stimulant ones may help with her weight through depressing appetite, but Atomoxetine can supposedly help with mood…but it can also be depressive!
You can play with dosage, timing and extended release versus quick acting and multiple doses. It can take a while.

https://genesight.com/

Thanks can I ask you how much it cost you throughout the titration? And is the £280 pm just for meds? Is that a typical cost? The clinic were very vague about that! They say it should take between 3 - 4 mths to get her settled. Then GP will do shared care if it is all through the psychiatrist. I'm estimated about £2k maximum until this can happen. Do you think that's realistic?

You're right about it not being typical but I was allowed to choose which meds I started on (NHS titration). The standard procedure for stimulants is to start everyone on Concerta and see how they get on before exploring other options.

I had my own reasons for not wanting to try Concerta, which I explained at my first appointment, and I asked to start on Elvanse instead. The psychiatrist went off and did a bit of research, then agreed a couple of days later. Luckily Elvanse is a perfect fit for me so I completed titration and have been on 60mg for 2+ years.

One of our teens was treated and titrated through camhs and it took far too long, our other DC was diagnosed privately commenced on medication, titrated over 2 months and simultaneously transferred for shared NHS (community psych) and GP care so we only paid for meds for 2 months

As both are still studying at Uni they take Delmosart/Xaggitin/Concerta XL depending on which is available which is my current monthly nightmare, they also have boosters of methylphenidate but don’t take them regularly

Both take meds for anxiety along side and are on yearly psych in the community reviews which are online, it’s worked well for both of them

If went Right To Choose pathway you have an NHS diagnosis you should be able to do a referral for 'medication titration only' to another RTC provider which does include titration or to a local NHS ADHD service, ours has a much shorter waitlist for titration/meds than assessments. Do check her NHS records the GP practice hasn't incorrectly listed as it as being a private diagnosis as heard some have which may cause unexpected problems later on.

Here's a list of the current RTC providers so will have to check which also cover titration. Psychiatry UK titration waitlist is probably longest min 8m+ as they're most well known. With all the medication shortages and hold on new starters on anything other than methylphenidate for months it's held up the process.

The major downside to private is you can end up stuck footing the bill for medication long term as GP's don't have to accept a shared care agreement to take over the prescribing and many are currently declining this extra responsibility. A local NHS ADHD service may or may not take over or suggest go on their waitlist to redo, it's all a bit potluck. With RTC if the shared care is declined by GP the provider should carry on prescribing and billing NHS as it did before or could potentially switch to local ADHD service if prefer.

Titration they start low dose and gradually increase to find out what dose suited or if need to switch medication as it's individual what works best for patient so can end up chopping and changing a lot more than costs of a steady monthly dose. For some it maybe relatively smooth process and suit first (usually methylphenidate) and others not. I had interruptions due to supply shortages.
With private you usually have medication cost + written prescription fee + titration nurse or psychiatrist review fee, some places charge a one off block titration fee and you just pay extra for the medications. The medication cost can very greatly which is perhaps why they're unable to advise a rough estimate.

On the ADHD medication you also need have an annual review with an ADHD specialist as minimum or if want to change dosage or medication type as most GP's are only able to prescribe as advised by the specialist.

Has the gp confirmed they will do shared care?
£280 is on the high side

They have a rough sequence of meds they have to work through in priority order so you’re unlikely to be able to choose at outset.

There may or may not be side effects but if they don’t suit her after the amount of time the prescriber suggests she’d be able to stop (under their direction).

Your description makes me wonder if she needs the antidepressants. However it’s very well know that untreated adhd can result in depressive symptoms so it’s possible this will improve for her overall when she gets the right meds

@123Squirrel hi can you help me with your post.
Are you saying some right to choose referrals can include diagnosis but not titration/medication?
How can that be?
Our gp has said our right to choose referral will only include diagnosis but this doesn’t make sense to me?

It's not up to your GP, it's your legal right to choose which of RTC provider you wish to be referred to. In some areas the local NHS service has been contracted out to a private provider.

To be an RTC provider it has to hold at least one NHS contract for any health trust in England it doesn't need to have been contracted to your local area.

Yes some will only include assessments on RTC. It's still useful as not everyone will want to try medication and they can have shorter waitlist so it can still be quicker to do 2 separate referrals. Often your diagnosed then put on a separate waitlist for titration, so Psychiatry UK which does both is about 18m+ . ADHD360 at one point had similar waitlist but it lost some of its contracts it's waitlist time has significantly dropped.

I'm not sure of the exact reasons why some RTC providers don't offer both. If they usually have psychiatrist titrate in private practice possibly the fee the NHS contract offered isn't deemed enough to cover that process as it's more labour intensive than a one off assessment. They often use nurse prescribers to titrate, which would be significantly cheaper rate, but there's limitations on supply of those specialised qualified staff available to hire too.

My son went through a couple until we found one that suited him. This was under NHS medical supervision so I can't comment on private care.

He's currently on Methylphenidate (Xaggitin or Concerta). But it is a case of trying each one and seeing how they get on which can be a fairly long process.

Getting the meds is also a headache- there are massive manufacturing issues on my son's meds.

@123Squirrel so whether or not your referral includes titration/meds is solely dependent on what the provider can provide (under the rules)? Would it be the case then that all right to choose to say adhd360 would include titration/meds? I am hopeful gp has just got it wrong.

Both my sons had severe migraines fpr years which stopped after 3-4 months on adhd meds. We couldn't believe it.

I'm not a doctor but I'm a psychotherapist and have treated a ton of people with ADHD. There can be side effects with any medication and which med to go for is so individual. Sertraline can have vicious side effects to and shes still here. Meds can also be stopped, tweaked and changed too so this isnt a forever decision. Listen to the specialist and go from there. ADHD meds can be life changing. The progress I have seen in some people after going on them has genuinely miraculous. Best of luck to DD in her treatment.

@BonifaceBonanza

Yes it depends which you select. If you look on the list of providers on the ADHD-UK link I posted it does mention for some whether they are assesment only with no medication.
Its best to check the providers website for its Right to choose section for more specific information and what they require for referral from the GP.

If you go for a provider which is diagnostic assessment only. It would require GP to do another referral for the medication titration to either an RTC provider that offers it or to the local NHS service. At some points it's been the faster route despite being a bit more hassle but can vary as waitlists change

You can still opt to switch while on a waitlist, some people have managed to be on multiple lists and wait to see which is available first which I didn't think was allowed but appears is possible.

Do check after a month or so if your referral has been sent and it went to correct place if you've not heard anything as seems quite a few get forgotten, lost or are auto-sent to local NHS service even though patient requested an RTC provider . It's better to discover any issues as early as possible.

Elvanse is effective for binge eating and ADHD

Thanks for the answers. I stumbled across a website called Brainzyme which sells tablets that sound like they help with many traits of adhd. Has anyone ever used them?

You can try them and you can also try caffeine, but for someone with clear adhd symptoms the tablets are unlikely to make any difference so hopefully price is reasonable - it’s worth a try.

Also whilst you’re waiting for medication and before you mention the brainzyme to dd, watch the Horizon placebo documentary by Michael Mosley. Fascinating and potentially of some benefit since adhd is neurological.

Various issues here - too late for you but hopefully this will help other people to understand not to go to a RTC provider who doesn't titrate meds. I'm not sure why they are allowed.

If the diagnosis was made properly, by a psychiatrist or GP with extra training, then it may be accepted by a private consultant who can prescribe until you get to the top of the NHS WL. But if it was from one of the RTC providers who just use nurses/pharmacists to make the diagnosis then to be honest no-one is going to pay much attention to it and you'll need to start from scratch with a new assessment if you go private.

Brainzyme and genesight are good ways to lighten your wallet but won't do anything else for you.

Have you asked the GP if they will share care with a private psychiatrist? A few do, most don't.

ADHD360 don't have any doctors in their team, including at the point of diagnosis. Avoid.

Yes the GP will accept shared care once she is settled on meds and if it's a psychiatrist report. Not a nurse. But we will have to pay for titration privately (or wait for nhs diagnosis)

That's a lot better than most. If you plan for maybe 6 months of monthly appointments and cost of meds, then you shoudl be able to move to GP care.

It’s not really relevant whether there are any doctors on the team? An ordinary doctor is completely unable to diagnose adhd, whereas according to the nhs, a specialist nurse can

“if it was from one of the RTC providers who just use nurses/pharmacists to make the diagnosis then to be honest no-one is going to pay much attention to it”

This is untrue and I wonder whether you actually understand the diagnosis process in those organisations.

Our local CAMHS are extremely fussy and have accepted a “non doctor” diagnosis from adhd360.