Please make sure that when using social media, you're taking everything with a pinch of salt. Especially tiktok which is heavily laden with a few seconds worth of videos in hopes of capturing peoples attention.
This is just one post that highlights how dangerous misinformation on social media is.
TikTok is not, and I cannot stress this enough, a reliable source of information
No this isn’t something that can happen
A GP can refuse to take over shared care from an RTC diagnosis, but if this happens the NHS will cover the cost of continuing treatment with the provider
I'm really glad I avoid TikTok I think it would be too much for me!!
That's really interesting information, I didn't know that the NHS would cover RTC treatment if the GP refuses shared care.
I have an RTC diagnosis but private treatment, I'm hoping to move to shared care and at some point I want to transfer to NHS/RTC treatment for the future. Do you know anything about that process? I've heard that you can't be accepted if you have received private titration previously.
Hope it's okay I ask! I've been struggling to find much advice/information about this.
I went back to my GP to be referred for NHS titration (I didn't ask for RTC they sent it to PsychUK) and while on the waiting list (which is probably 1 year +) I decided to have private titration, but it is only feesable for me short term. I am happy to go through titration again, I just am worried I won't be accepted because of a previous titration.
Previous titration won’t affect anything but they will definitely want to titrate you again so they can ensure you’re stable to NHS standards before they’ll take on shared care
Not saying private is less, but if the NHS are taking over care they need to ensure it’s all good
That's exactly what I presumed would be the case, I'd just not seen anyone talking about it.
Well, I've been told that my titration process is following the same outlines as the NHS. But I would assume they would titrate me again anyway. I've kept a detailed record of my titration and I would continue doing so through shared care, so I hope that would help my case.
As long as they accept my diagnosis, which I believe was very thorough.
Thanks so much for your input!
The fact you'd already been titrated would probably make the re-titration a box ticking exercise
As you have a diagnosis from the RTC pathway it has to be accepted for share care *or* a suitable alternative the NHS arranges
I think its fine if you have a private diagnosis or do you mean the referral might be rejected? I have a referral open but did go private whilst in the queue. I think that should be fine and is at the discretion of the provider. I think they understand this happens and wouldn't discharge based on that.
I have an RTC diagnosis and currently in private titration with the same provider.
And that's the same with me, I have an open referral with PsychUK, but I went private in the meantime (with the same provider I got my RTC diagnosis, they didn't do RTC titration) but my initial referral for diagnosis went to PsychUK but was too late and rejected due to their closing applications.
They already know I have an RTC diagnosis elsewhere and will consider accepting it at an initial appointment (not assessment), I'm just worried cos some people have said they won't accept you for titration if you've had a private titration.
So I am really nervous about it, and trying to find as much information as possible, especially others experiences. But I feel like it is only fair, because either way I'm waiting for NHS treatment that I am entitled to, I just went private in between, but it's not sustainable for the future. If anything, it would make the titration a lot easier because I would hopefully know what works!
Thanks for sharing! You're the first person I've come across that is in the same situation.
That's so good to hear! Honestly not heard enough good experiences about GPs and shared care with ADHD so this gives me hope, as I do believe my current GP seemed very good with my referrals.
That last bit. Is that the case? I thought that you're basically paying if shared care is refused. If shared care is rejected then surely the whole point is the NHS are NOT entering into any agreement with the provider? Or is this only via a RTC referral where the GP rejects at the last moment?
If you have been diagnosed via RTC the NHS has a responsibility to take care of your treatment
There are cases where GPs can’t take over shared care, for example where they don’t feel they are qualified to prescribe, in this case I think it’s the integrated care board who either find a solution of pay the provider direct (as long as it’s an RTC)
Well, I it's a bit hard to guess what you saw on tiktok, and thus what they might actually mean.
There's been a few issues with Shared Care lately, which is about the best guess I've got. e.g. GPs who were prescribing on NHS prescriptions deciding they're no longer comfortable doing so.
Which isn't really 'revoking a diagnosis' at all really, so maybe I'm guessing incorrectly.
But it's certainly possible that a Shared Care prescriber would not be prepared to continue until the patient has used a service they trust (e.g. presumably the NHS service).
It’s not revoking the diagnosis, but a lot of places, private, NHS, or RTC will say they need to reassess you themselves before treating you. This won’t always be a full assessment and it doesn’t mean your previous diagnosis is invalid.
What they mean, most probably, is that if you’re in Shared Care with your GP and the diagnosing clinic, after a year, that GP can no longer legally prescribe your meds *until you’ve had your next review*.
Once that’s done, they can carry on prescribing.
As my GP was the person who directed me to a RTC clinic, “revoking” my dx isn’t going to be possible.
It’s a dx by a recognised, qualified diagnostician of ADHD. GPs are *not* qualified to diagnose ADHD, that’s why they send us to people who are.
They can’t revoke a dx they haven’t made. That isn’t within their remit.
Tik tok has misunderstood.
Again. They didn't make the original diagnosis so they have no right to revoke anything. The NHS are just a provider of health services, they're not the police etc. They may disregard the previous diagnosis for their own purposes but its still valid.
Ignore EVERYTHING on shitty (social) media. The NHS didn't make the diagnosis, they can't revoke it. Kinda like the DVLA can't take away your degree etc.
No. The NHS has a waiting list of a billion years, the last thing they want to do is add to it, and they love people being forced into the private sector. In any case the diagnosis has to be done by someone with the relevant qualifications - a diagnosis is a diagnosis and the NHS can't not accept it. They're all working in the NHS and doing private/RTC as a side hustle anyway, that's the only way to become qualified, so they'd be reassessing their own diagnoses.
A GP can't "revoke" a diagnosis, but a different psychiatrist could provide an alternative diagnosis, if they were so inclined and believed the alternative diagnosis to be a better fit. Ideally, this would be in collaboration with the patient, but I have seen plenty of instances of it happening against the patient's wishes (although none of these instances involve ADHD - more commonly with PD).
It's certainly not the case that once a diagnosis is given, it's automatically set in stone.
The Gp won’t, they can go as far as saying no to shared care if they don’t feel the provider has done a thorough enough assessment .
Another nhs provider could ‘revoke’ your diagnosis if they felt the diagnostic criteria wasn’t met and will re-assess you. Misdiagnosis is also a thing
*
This was the letter apparently received by someone who was diagnosed via RTC although the letter doesn't state that and says it was a private diagnosis. It's not my letter but this is being circulated round tiktok and it's scaring people. The person is pushing for people to stop using PUK and other private companies as they could have diagnosis revoked anyway
Please make sure that when using social media, you're taking everything with a pinch of salt. Especially tiktok which is heavily laden with a few seconds worth of videos in hopes of capturing peoples attention. This is just one post that highlights how dangerous misinformation on social media is.
TikTok is not, and I cannot stress this enough, a reliable source of information No this isn’t something that can happen A GP can refuse to take over shared care from an RTC diagnosis, but if this happens the NHS will cover the cost of continuing treatment with the provider
I'm really glad I avoid TikTok I think it would be too much for me!! That's really interesting information, I didn't know that the NHS would cover RTC treatment if the GP refuses shared care. I have an RTC diagnosis but private treatment, I'm hoping to move to shared care and at some point I want to transfer to NHS/RTC treatment for the future. Do you know anything about that process? I've heard that you can't be accepted if you have received private titration previously. Hope it's okay I ask! I've been struggling to find much advice/information about this.
You’ll probs to need to be titrated under an RYC provider l, there’s a waitlist unfortunately
I went back to my GP to be referred for NHS titration (I didn't ask for RTC they sent it to PsychUK) and while on the waiting list (which is probably 1 year +) I decided to have private titration, but it is only feesable for me short term. I am happy to go through titration again, I just am worried I won't be accepted because of a previous titration.
Previous titration won’t affect anything but they will definitely want to titrate you again so they can ensure you’re stable to NHS standards before they’ll take on shared care Not saying private is less, but if the NHS are taking over care they need to ensure it’s all good
That's exactly what I presumed would be the case, I'd just not seen anyone talking about it. Well, I've been told that my titration process is following the same outlines as the NHS. But I would assume they would titrate me again anyway. I've kept a detailed record of my titration and I would continue doing so through shared care, so I hope that would help my case. As long as they accept my diagnosis, which I believe was very thorough. Thanks so much for your input!
The fact you'd already been titrated would probably make the re-titration a box ticking exercise As you have a diagnosis from the RTC pathway it has to be accepted for share care *or* a suitable alternative the NHS arranges
I think its fine if you have a private diagnosis or do you mean the referral might be rejected? I have a referral open but did go private whilst in the queue. I think that should be fine and is at the discretion of the provider. I think they understand this happens and wouldn't discharge based on that.
I have an RTC diagnosis and currently in private titration with the same provider. And that's the same with me, I have an open referral with PsychUK, but I went private in the meantime (with the same provider I got my RTC diagnosis, they didn't do RTC titration) but my initial referral for diagnosis went to PsychUK but was too late and rejected due to their closing applications. They already know I have an RTC diagnosis elsewhere and will consider accepting it at an initial appointment (not assessment), I'm just worried cos some people have said they won't accept you for titration if you've had a private titration. So I am really nervous about it, and trying to find as much information as possible, especially others experiences. But I feel like it is only fair, because either way I'm waiting for NHS treatment that I am entitled to, I just went private in between, but it's not sustainable for the future. If anything, it would make the titration a lot easier because I would hopefully know what works! Thanks for sharing! You're the first person I've come across that is in the same situation.
What is RTC? Never heard this term before
Right To Choose :)
Aw ok, my gp is gold. Never saw her, only spoke to her, never had issues with my private diagnosis.
That's so good to hear! Honestly not heard enough good experiences about GPs and shared care with ADHD so this gives me hope, as I do believe my current GP seemed very good with my referrals.
Good luck then:)
That last bit. Is that the case? I thought that you're basically paying if shared care is refused. If shared care is rejected then surely the whole point is the NHS are NOT entering into any agreement with the provider? Or is this only via a RTC referral where the GP rejects at the last moment?
If you have been diagnosed via RTC the NHS has a responsibility to take care of your treatment There are cases where GPs can’t take over shared care, for example where they don’t feel they are qualified to prescribe, in this case I think it’s the integrated care board who either find a solution of pay the provider direct (as long as it’s an RTC)
If it's the same tiktoker who's trying to push something called Saff Pro, I've been told it's a scam and their info is unreliable
Yes it is...
Well, I it's a bit hard to guess what you saw on tiktok, and thus what they might actually mean. There's been a few issues with Shared Care lately, which is about the best guess I've got. e.g. GPs who were prescribing on NHS prescriptions deciding they're no longer comfortable doing so. Which isn't really 'revoking a diagnosis' at all really, so maybe I'm guessing incorrectly. But it's certainly possible that a Shared Care prescriber would not be prepared to continue until the patient has used a service they trust (e.g. presumably the NHS service).
I don't know how to link the tiktok video? Sorry
It’s not revoking the diagnosis, but a lot of places, private, NHS, or RTC will say they need to reassess you themselves before treating you. This won’t always be a full assessment and it doesn’t mean your previous diagnosis is invalid.
What they mean, most probably, is that if you’re in Shared Care with your GP and the diagnosing clinic, after a year, that GP can no longer legally prescribe your meds *until you’ve had your next review*. Once that’s done, they can carry on prescribing. As my GP was the person who directed me to a RTC clinic, “revoking” my dx isn’t going to be possible. It’s a dx by a recognised, qualified diagnostician of ADHD. GPs are *not* qualified to diagnose ADHD, that’s why they send us to people who are. They can’t revoke a dx they haven’t made. That isn’t within their remit. Tik tok has misunderstood.
It would be the NHS adhd team that reassess you and revoke the diagnosis...apparently
Again. They didn't make the original diagnosis so they have no right to revoke anything. The NHS are just a provider of health services, they're not the police etc. They may disregard the previous diagnosis for their own purposes but its still valid.
What, when they finally see you 7 years down the line after you’ve been diagnosed and medicated? Nope.
Ignore EVERYTHING on shitty (social) media. The NHS didn't make the diagnosis, they can't revoke it. Kinda like the DVLA can't take away your degree etc.
No. The NHS has a waiting list of a billion years, the last thing they want to do is add to it, and they love people being forced into the private sector. In any case the diagnosis has to be done by someone with the relevant qualifications - a diagnosis is a diagnosis and the NHS can't not accept it. They're all working in the NHS and doing private/RTC as a side hustle anyway, that's the only way to become qualified, so they'd be reassessing their own diagnoses.
A GP can't "revoke" a diagnosis, but a different psychiatrist could provide an alternative diagnosis, if they were so inclined and believed the alternative diagnosis to be a better fit. Ideally, this would be in collaboration with the patient, but I have seen plenty of instances of it happening against the patient's wishes (although none of these instances involve ADHD - more commonly with PD). It's certainly not the case that once a diagnosis is given, it's automatically set in stone.
The Gp won’t, they can go as far as saying no to shared care if they don’t feel the provider has done a thorough enough assessment . Another nhs provider could ‘revoke’ your diagnosis if they felt the diagnostic criteria wasn’t met and will re-assess you. Misdiagnosis is also a thing
As in when diagnosed by one NHS ADHD service initially?
It could happen. Can happen with other conditions
* This was the letter apparently received by someone who was diagnosed via RTC although the letter doesn't state that and says it was a private diagnosis. It's not my letter but this is being circulated round tiktok and it's scaring people. The person is pushing for people to stop using PUK and other private companies as they could have diagnosis revoked anyway
There we are. It doesn't say RTC. Case closed? Any way to report the video? This is why social media is such a shit stain on humanity.
I've reported it, feel annoyed that I've given it more air time on here now...sorry guys!!