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ADHD treatment withdrawn with no continuity plan — has anyone experienced this?

Myoshka

I’m trying to understand something that feels like a gap in how care is supposed to work.

I have established ADHD treatment through the NHS.

My GP practice has now withdrawn prescribing under a blanket policy.

What I’m struggling with is that there is:

  • no interim prescribing or bridging plan

  • no clear handover to another service

  • no named clinician responsible once the medication stops

I have less than weeks of medication left.

From what I’ve been able to understand, even if shared care is declined, there should still be a safe transition so treatment isn’t just interrupted.

These are the standards I’ve been looking at:

  • Safe care and treatment (Regulation 12) — care should not expose patients to avoidable risk

  • Person-centred care (Regulation 9) — care should reflect individual clinical need

  • GMC — Good Medical Practice — continuity of care and safe handover

  • Equality Act 2010 (reasonable adjustments) — processes shouldn’t create additional disadvantage

  • NHS Constitution — expectation of coordinated, appropriate care

Right now it feels like I’ve fallen between services.

Has anyone else experienced treatment being withdrawn like this?

What actually happens in practice when prescribing stops?

Who is supposed to take responsibility at that point?

I’m autistic + ADHD with significant executive function difficulties, so managing multiple complaints and trying to coordinate this myself is only possible with assistive technology I’ve had to build. If I’m understanding this correctly, this shouldn’t be happening.

I’m trying to determine whether this gap is happening to others — and whether these protections are being applied in practice, or if this is a point where awareness or enforcement is breaking down.

  • in reply to Myoshka

    [Post removed by mods]  Rule 14 

  • Quick follow-up as I’ve looked into this more

    From what I can see, patients are not supposed to be left without needed medication just because shared care breaks down.

    The protection seems to be there on paper:

    • patients should not be left unable to obtain medicines because communication or handover has failed

    • if shared care is not in place, responsibility is still supposed to sit somewhere

    • there should be clarity about who is responsible and who the named clinician/team is

    What seems to break down is the point where GP prescribing stops, but no specialist or fallback route is clearly holding responsibility.

    So for anyone this has happened to: you are not imagining the gap.

    I’m trying to work out:

    • how widespread this is

    • whether people have been told different things

    • whether anyone has actually had a safe handover done properly when prescribing was withdrawn

    I’ll add a quick poll below as well, just to get a clearer sense of how often this is happening.

  • in reply to Fibonacci Squid

    Thank you — this is really useful.

    The point you made about PALS being able to identify who is actually responsible and ask the right questions is exactly the part I’ve been trying to understand.

    From the research I’ve been doing, it’s starting to look like this may be a wider pattern — not just individual cases, but something that relies heavily on the person knowing where to go and how to navigate it.

    Given the scale of ADHD, and how many people are likely still unrecognised, that becomes a real issue when continuity breaks down like this.

    I’ll follow this route and see what comes back, and I’ll share any updates or patterns I find here so it can help others as well.

    Really appreciate you pointing me in this direction.

  • in reply to Anna Mod

    Thank you Anna — I appreciate you taking the time to share these.

    I’ve been working through the guidance and trying to understand how the different parts of the system are meant to connect in practice. Some of what I’m seeing suggests there are protections and expectations around continuity, but they don’t always seem to translate into a clear pathway when something like prescribing is withdrawn.

    What I’m trying to do here isn’t just solve this for myself, but understand whether this is part of a wider pattern — and how often people are finding themselves between services without a defined route forward.

    If that’s the case, it feels like something that would benefit from clearer awareness and consistency, so people actually receive the level of care that’s intended — both within NHS pathways and where private care intersects with them.

    I’ll take a look through these links in more detail — thank you again for pointing me to them.

  • This sounds like a good moment to get in contact with PALS (Patient Advice and Liaison Service) as in my experience they are the ones who will know who is taking over care, and have the authority to ask pointed questions to the relevant people. I used them when the autism services in my area changed and they were very helpful with answering all of my questions, and were good at clear and concise information and updates when necessary. 

    In my experience it is sometimes more productive to go in with a mindset of problem solving instead of complaining with them, but they are designed for either purpose.

    Here is a link to the explanation of PALS in the NHS https://www.nhs.uk/nhs-services/hospitals/what-is-pals-patient-advice-and-liaison-service/ 

    And here is the link to finding your local PALS office (there is local varience) https://www.nhs.uk/service-search/other-health-services/patient-advice-and-liaison-services-pals 

    Hope this helps

  • Hello Myoshka, 

    I am very sorry to read this. I can only signpost to advice about Autism on our website but there may be some advice there that can help you.

    On our after diagnosis section there is advice about formal support. Please find the link here:

    https://www.autism.org.uk/advice-and-guidance/diagnosis/after-diagnosis/formal-support-following-an-autism-diagnosis

    Also, in the same section is advice on what if formal support is not enough. Please find the link here:

    https://www.autism.org.uk/advice-and-guidance/diagnosis/after-diagnosis/what-can-i-do-if-formal-support-is-not-offered-or

    With best wishes, 

    Anna Mod