to want to medicate DD’s ADHD but don’t know how to?

[MigraineMarnie]

Long and short of it is that DD is massively struggling in secondary school and we have finally decided medication may be the best route to go down.

How do you find a private GP to prescribe?

She had her assessment in another country ( my home country ) as the NHS lists were approx 3 years but now I’m going to really struggle getting my hands on the so needed medication.

Can anyone help?

Marnie it won't be too late to improve her self esteem! If methylphenidate works for your daughter as it did for my son, she will feel a million times better very quickly. School was suddenly so much less draining, he was happier there and the evenings were better too.

If anyone has any useful links to academic research on the medication please do share.

I've administered an ADHD medication clinic for over 10 years - I am not a medic but the following is my knowledge and experience .
Methylphenidate is the generic stimulant medication used for treatment. Most common brand names are Concerta XL and Equasym XL. Both these meds are slow release. Previously Ritalin was the most common medication but this is a short life medication meaning 2 or 3 tablets may need to be taken throughout the day. As a stimulant appetite may be suppressed and heart rate may increase which is why height, weight and blood pressure and pulse must be monitored. Tics can sometimes develop whilst taking the meds.
Non-stimulant medication most used is Atomoxetine or Guanfacine and these can be prescribed if stimulant medication is not indicated.
Many parents prefer to give medication 'holidays' during school holiday times when the ADHD symptoms are most troublesome in the school setting. Hope this helps 😀

That’s so helpful thank you so much. With the non stimulants …. What’s the best approach to get them if the stimulants are working ?
obviously the nhs is about money and I suspect that’s why they are not offered as first line ?
could an approach be that the stimulants are not working for the full day and I don’t want her having them later in the eve as they keep her Awake .
thanks so much

OP - yes, that sort of cost base sounds about right. Our doctor charged 750 for the initial consultation and a further £650 for the formal assessment and follow up. We're also on a 6 month review period before moving to shared care - once that happens he will write to the Gp confirming the dose/medication that we are all happy with. She will then prescribe it and we will get it on the NHS. Every six months, we will have to pay for a review with the private psychiatrist to ensure that we are all happy. if changes are necessary, the GP can implement them but if more frequent monitoring is required, that will require us to continue paying for the private psychiatrist.

oh, and also, I don't think you should feel bad about not medicating. I also have this worry - should we have dealt with this differently or sooner or whatever. But I also think that it's not a bad idea to see what else you can do before you get to th meditation stage, and to try everything.

We went private for my son’s ADHD assessment as the CAMHS wait was about 3 years. Medication (methylphenidate) has been a total game changer for him.

I emailed my GP before the assessment regarding shared care. This means that the GP will provide the repeat prescription as long as the medication is fully prescribed by a senior paediatrician/ psychiatrist (I’m in England). My GP agreed immediately and I’ve never paid for a prescription.

My son is now finally under CAMHS and contrary to a lot of opinion they’ve been great!

Good luck

The stimulants were awful for my daughter; within one day we had to stop her taking them.

That's when she went onto Guanfacine which is a non-stimulant and it's been so much better. She actually has been to school this week and some classes, and enjoyed them! I can't tell you how much of a breakthrough this is.

Haven't rtft but there's a book called A Parent's Guide to ADHD Medication which gives a really helpful overview.

OK, lots to unpick here @MigraineMarnie

I'm a GP, I have ADHD, and so do my kids, so I get it from both points of view. Here's my thoughts:

1. NHS ADHD provision is woefully inadequate and embarrassing
2. That puts us as GPs under huge pressure to prescribe on the basis of a private assessment
3. Some private ADHD clinics use reputable, experienced consultants who have worked or do work in NHS psychiatry and are excellent
4. some will send out a diagnosis and the patient have never even seen a doctor, let alone a psychiatrist - maybe just a nurse and a pharmacist following a tick box approach
5. ADHD meds are shared care meaning that the GP prescribes, but you have to be under the care of a consultant for life. They are also legally controlled drugs, which is significant. They have potential for abuse, and a street value.
6. The person who signs the script carries 100% of the medicolegal liability

So, bearing all of this in mind, as a practice we have a policy that we will consider sharing care with a private psychiatrist, but each case will be done individually. We would look for the psychiatrist to be based in the UK, on the specialist register, ideally to work or have worked in a substantive NHS post, for the assessment to use reputable tools, for the prescribing to be in line with guidelines, and for private reviews to continue at least annually. We are happy to refer on the NHS and for the private reviews to stop when the NHS reviews stop. We will only take over prescribing when the dose is stable.

Some practices won't share care with the private sector under any circumstances, as they feel that the risk of the patient stopping paying, and then the practice is left sharing care with no-one, is too great. I have sympathy for this view. It also takes up huge resources of time, which we don't have.

So I'm afraid I wouldn't prescribe for you, because your consultant is abroad, I have no way of assessing how reputable they are, and your child won't continue to see them.

The costs you quoted are reasonable and you can expect to need to get the meds privately for probably about 6m (for comparison, the cost of a month of equasym is maybe £80 - £150 depending on the dose) if your GP is willing to share care after that, or to pay privately for them until the NHS takes over.

Sorry, it's rubbish. But it's not our fault that it's rubbish and we hate working in a broken system.

(PS, if you have the money, do it. The meds are life-changing IMO)

@newtablet thanks that's interesting about shared care as some Gps are not taking over right to choose patients either although they have an NHS diagnosis that met NICE guidelines to have been given contract, So I was wondering what other reasons that maybe? It's less of an issue to patient than private pathway as at least the NHS will be covering the bill but assume it may cost them more than GP shared care.

From reading other adults experiences online it seems psychiatrists/sevice both within NHS, RTC & private sector can be quite variable in quality (although not heard any with nurse/pharmacist diagnosing yet). Worryingly some Psychs have very outdated views on ADHD and not really any excuse for them not keeping up with research in their field of expertise.

@MigraineMarnie
The quote you have received doesn’t include the actual medication, you would need to pay for that on top.

”Shared care” is when the child is stable on the meds and the private service attempts to transfer the prescribing (and therefore the cost of the meds) across to the gp. You would still need to continue paying for private reviews.

in England you will very rarely find a gp willing to accept the shared care risk/responsibility from a private assessor. You may even find that the local NHS guidelines prohibit it. You will therefore need to assume that the shared care agreement won’t work out and that you will also need to continue paying privately for the meds. This is why it’s worth getting on the nhs waiting list in the meantime.

Another option (again seems many gps are unaware or unwilling) is to see if you can get an NHS referral to a private clinic using Right to Choose, this is then an nhs commissioned assessment and will be free and on the “nhs books”.

Have a look at ADHD360, they charge an initial one off fee and then an annual fee thereafter covering assessment, all reviews, all issuing of prescriptions (NOT the price of the meds) and the shared care request letter.

@MigraineMarnie do not worry, it’s not too late. As soon as you find the right medication at the right dose he will feel and behave completely differently (whilst medicated).

It also means that whilst medicated he becomes more capable of introspection and personal development. With your or a coaches support he will be able to begin to notice for example when he starts catastrophysing, interrupting, deflecting etc and this self awareness is a huge step and very empowering.

Can she get prescribed by the place that diagnosed her, by visiting the country, then possibly zoom calls to follow up? Whilst waiting for a UK doctor.

ADHD meds are all legally controlled drugs so long-term prescription by a Dr abroad would be problematic in terms of the customs issues of getting the meds into the UK

It's nothing to do with the actual cost of the medication - that's a common urban myth that we don't want to prescribe expensive meds. It's complex and you need to understand the background, which is that GP funding has been cut in real terms every single year since 2004, we can't recruit (even if we did have the money to pay staff - my surgery has been under-doctored for well over a decade), demand has gone through the roof and most of us are on the brink of burnout. Shared care is more unresourced work, in many cases. The best care comes with funding to cover our time and the admin time to do it safely - this isn't the case for ADHD meds anywhere that I am aware of.

The concern about right to choose patients is they are generally with private companies contracted to the NHS. Over my 20 years as a GP, I have seen so many of these come and go - they arrive in a flourish, come to a practice meeting, tell us about their amazing new service and encourage us all to refer. They have usually completely underestimated the demand and within a month or two are closed to new referrals and often have stopped providing the service within a year. If a GP has agreed to share care with a right to choose company that then goes bust or leaves the area, the GP is left sharing care with no-one and that isn't safe.

I do share care with Psychiatry UK, I've been impressed by the quality of their letters, they don't ask us to take over prescribing until the patient is stable, they follow-up, and their letters contain a request for us to take over shared care, not a demand - they seem to understand the medicolegal issues better than others. However they are now also overwhelmed and closed to new referrals. I would be more cautious about sharing care with a new company until I had some experience of their longer term follow-up. Shared care can only happen with the freely given consent of all parties including the GP. Sadly some consultants don't understand this.

I'm old-fashioned - I think that when you become a consultant you should gain experience in the NHS for years before you offer a private service. When looking for a consultant for my kids it was interesting to see that many clinics had well worded bios on their website, implying lots of experience, but when I looked up the consultant on the GMC website it was often clear that they had only become a consultant a year or so ago and had clearly gone immediately into the private ADHD world. I wouldn't go to someone like that. Both the kids and I see experienced consultants.

Agree not too late - not sure how old your child is but even if you're not diagnosed til the exam years of secondary school it's definitely worth it.

ADHD seem largely nurse/pharmacist led. As a GP I wouldn't share care with any company who don't use consultant psychiatrists to see patients.

You can use this link https://www.gmc-uk.org/registration-and-licensing/the-medical-register to check out a consultant. You can see when they qualified from medical school, when they qualified as a consultant (the date given in the specialist register box) and who their revalidation officer is. If their revalidation officer is an NHS Trust, they do both NHS and private work. If it's a private clinic, they only do private work.

It will be because your DD is not under the c current care of a U.K. psychiatrist. The patient transfers gradually via a shared care agreement to the NHS. You will need to go down the private route in the U.K. I'm afraid. Please note a GP cannot prescribe these controlled drugs without the patient being under a consultant psychiatrist care.

As prev poster said, there is absolutely no need for a psychiatrist here. GP can prescribe under the shared care of a different specialist, however many/most will not. Similarly many will also not accept shared care from a psychiatrist in private practice (even if they also work on the nhs).

I don't know any GP who would prescribe ADHD meds on the say-so of a professional who isn't on the specialist register for psychiatry. It would be medicolegally risky.

This is such a helpful thread! Thanks very much to the GP contributors.

This is the problem with people having always relied on the NHS - going private it's worth at least looking up the letters after a practitioner's name to see what it means.