ADHD private diagnosis and GP shared care - is there a standard?

[LittleMy77]

After being on an NHS waiting list for 18+ months for an ADHD diagnosis, I finally went private with ADHD360

I got a diagnosis and am now trialling meds and approached the GP about shared care once meds are stable

They refuse to do shared care with a private diagnosis and say for them to take it over, I need an NHS referral. Which I can’t get as the waiting list is approx 3 years and our health trust has changed the criteria for assessment to basically only anyone who is at risk of self harm or harming others.

Is there any point arguing this? Is there any standard baseline for provision of care - I know it varies massively from trust to trust. I’m fortunate in that I can afford it (for now) but I’m really annoyed at the gate keeping and absolute inaccessibility to services

We went private and got a diagnosis of ADHD for DD.
Trialed meds for about 10 months then when she was stable and improving, the private Psychiatrist wrote a referral letter to DD’s GP.
They accepted, continued the medication on NHS for about 6 weeks as a courtesy but meanwhile she was referred to an NHS psychiatrist for a review.
The psychiatrist wouldn’t take her on until she’d reviewed all clinical letters from the private sector including method of diagnosis to ensure correct process was followed as per DSM.

Your psychiatrist has to approach the NHS, not you, I believe.

Your psychiatrist has to approach the NHS, not you, I believe.

Definitely this!

I was diagnosed privately - I tried asking my NHS GP for a referral and she wouldn't refer me as "they'll just give you amphetamines and we don't really advise that" (seriously!!!). I told my employer and they agreed to pay for me to get a diagnosis privately. I then paid myself for all the titration appointments (so monthly private psychiatrist appt and private prescription).

As my titration ended, my private psychiatrist wrote to my NHS GP asking them to agree to a shared care agreement. I was expecting that I would have to continue shelling out £400/month privately and was gobsmacked (and delighted!) when my GP surgery agreed to shared care. I'm still waiting for my first NHS prescription to be issued though so I won't fully trust it until I have my meds in my actual hand.

So the letter from ADHD360 specifically says for me to contact the GP to ‘ascertain their views on providing your prescriptions’ as GPs often don’t update them with their decision

I don’t know whether with recent reporting etc on diagnosis whether something has changed

I only found out my GP's "views" when I had a missed call and a voicemail from my GP surgery's pharmacist (I didn't even know they had one!). He rescheduled the appt (that no-one had told me about) and when we spoke, he said they would agree to shared care and he would sign the agreement and return it back to my private psychiatrist. This happened last Friday (this is London - Tower Hamlets NHS).

The only delay in transfer of care for us was the GP replying to the private clinic by post. The letter they sent was lost. They agreed to emailing eventually. ( Remote part of Scotland). Caused delay of a month.

The GP pharmacist then called us to ascertain some details, doses etc. GP did NHS psych referral and meds were supplied up to first appointment 6 weeks later.
As above, NHS psychiatrist went through the private documents with a fine toothed comb before agreeing to take over care.

DD doing well on meds and gets psychiatrist appointment every 6 months now.

Process has to be followed and that’s initiated by your private clinic contacting your GP in writing.

I’d advise contacting your clinic,OP.

Do they understand shared care?

I was diagnosed privately. The GP took over shared care , so they simply issue my prescriptions. I still have to have a private annual review with my psychiatrist at my own cost.

In going to ask my GP if they can take over the private review cost but fully expect to be told to wait a while for that. Otherwise its like jumping the queue.

What I wouldn't expect is for the GP to tell me I need an NHS diagnosis as that's just a waste of resources.

Timing is important. I was diagnosed in 2019 when there was less demand. I had spoken to the GP before getting the assessment to ask if they would take over shared care.

At the time I was signed off work for a month with stress and having a lot of GP input as well, whether that was a factor in their response I don't know.

If I don't have the annual private review, the private service will discharge me and the NHS will stop issuing prescriptions. The GP would never change my dose or have anything to do with my ADHD medication.

@2024horizons probably not re the understanding. Our GP practice is stretched to the extreme and any interaction with them is v difficult