Privately diagnosed, but NHS says I don't have ADHD... Now what?

Hi all, hope you're having a pleasant Thursday evening. My feelings on all of this are still rather complex and difficult to pin down into words (plus it's a little emotionally raw even 6 months later) but I'll try not to be too confusing!

Back in about 2018, I first learned that ADHD was more than the stereotypical presentation we so often see in media. It aligned with many of my issues (chronic procrastination, disorganisation, failing academically, extremely messy environment, impulsive eating and spending, inattentiveness, excessive fidgeting, etc etc) so I tried to get a referral for an ADHD assessment. My GP told me that she felt it was "just anxiety", and that the centre I had my Low Mood CBT at shared the same consensus, so I wouldn't be referred for an assessment.

This was obviously upsetting to hear, but I soldiered on and tried to put it out of my mind until covid hit. Like many of us during the great lockdown, my mental health severely spiraled and I entirely struggled to cope. In a moment of desperation I booked a private assessment with an ADHD centre that was based in England (I live in Scotland, but they were offering the assessment at a discount that was too tempting to ignore). I attended the assessment with my mother, relayed everything I could about my struggles as a child and as an adult, and bingo! I was diagnosed with Inattentive-type ADHD.

Now, the problem with going private is that it meant I was saddled with the cost of both my medication (£90 a month), as well as check-up appointments as I adjusted my medication, plus another check-up twice a year to the tune of £200 each. My attempts to transfer over this to shared care didn't bear fruit - Communication between my local GP and the centre was pretty dicey, with claims that they had no record of me contacting them previously, and none of the documents that I requested the ADHD centre transfer over.

Frustrated, I finally bit the bullet and asked if I could request an assessment on the NHS in order to carry over my treatment with them. And what do you know, they actually said yes! I was put on the waiting list and managed to hunker down for the next 2.5 years, weathering mental health storms and putting all of my mental and emotional energy into functioning at work - I'm a nursery teacher, this little tidbit will be surprisingly relevant later - whilst every other aspect of my life crumbled at its foundations.

Fast forwarding ahead to my assessment, and... I'm honestly not sure what to make of it. The fellow doing my assessment seemed pleasant and interested enough, asking me a lot of questions about my childhood, my work, my socialisation, my interests... The first little niggle reared its head when he carried out the precursory mental health check however, and asked what else I was struggling with outside of my concerns about ADHD.

Which is when I opened up about the intrusive thoughts I had been experiencing for quite some time.

For the past... 5 years, or so? I had been struggling intermittently with intrusive thoughts. At first they were based more on my self image and general ill will towards myself, but after a few years they began to mutate and encroach on other aspects of my life. The more fear and personal responsibility I felt, the more twisted and cruel the thoughts would become. About my friends. My family. My girlfriend. Even (and most horribly of all) the children in my care.

I began to open up about this, tentatively at first, before confessing that these thoughts had been affecting how I felt about my work. I was trying not to cry as I fidgeted in my chair, looking around the room and avoiding his eyes in order to avoid blubbering away in front of him. He listened attentively, nodding as I spoke, before cutting in with a comment that made me stop in my tracks entirely:

"If these thoughts are as severe as you're making them sound, then I find it quite concerning that you're still working there."

I instantly panicked, filled with the fear that he would report me for being a dangerous person, and tried to about-turn and water down what I had been saying - No no, you see, I'm scared I'll accidentally drop a child, or fall on them, or say something rude. Nothing as terrible as I made it sound before, so sorry for the confusion!

He seemed assured by that, and the session continued as normal from that point. I highlighted my failing out of college due to being unable to complete any work, the time I hid from my highschool english teacher for an entire month in the school toilets because I hadn't finished the last three essays for my folio, before being dragged into the computer lab and forced to write them all within five hours on the day of the deadline..

He seemed particularly interested in how these issues affected my current place of work however, as he was surprised I had remained at the same company for 10 years without serious disciplinary action. I explained that while I struggled greatly with the paperwork and assessments, often falling months behind and scrambling to finish it all, I'd been saved many times over by my supervisors who often spent their own time adding in information and making adjustements to compensate for my lack of pictures and observations.

He asked me on multiple occasions if I had been given disciplinary action for any of this, if I had been written up, if there was a record of anything of the sort on my work file. Which is when I told him that my management was exceedingly understanding and patient, that one of the managers had looked after me when I was young, and that I felt they were sorry for me and knew how much I was struggling.

I know this is an unusual situation, and that I'm incredibly incredibly fortunate to not get into any severe trouble. I wonder if this is what influenced his final decision, that I didn't have ADHD? He asked me a number of times about this, almost seeming to coax me into saying yes, but I honestly haven't been written up yet - Although as time passes and the most experienced team members leave, my struggles to complete paperwork become more and more apparent.

He also said during the appointment that some of my answers were "a bit spectrum-y", but he never elaborated on this or mentioned it during the phone call about my results.

Oh, the results - So he called me 6 weeks later after I had been forced to chase him up on repeated occasions, using a phone number for a clinic that he didn't even work at anymore, to tell me that after a consultation with a psychiatrist they had concluded I didn't have ADHD, and that it was... Anxiety.

I was understandably shaken and upset by this, as I'd kind of set my hopes on this being a phone call that would answer a question that had been plaguing me since I was young. That it would be an answer that would make me feel a little less like an alien, or a toddler in an adult's body, or a failure in human form. But I swallowed my feelings down and told him that I felt it was more than anxiety, as I experienced many of these struggles even when I was entirely comfortable and away from any anxiety triggers.

He didn't have much to say on that, but instead began asking me about the intrusive thoughts I had mentioned before - If they were still impacting me (yes), if I had been harming myself due to them (yes), and if these thoughts sounded like the voices of separate people (no). He then expressed his sympathetic concerns, as they sounded "quite distressing", and seemed to be something I would benefit from help with. He scheduled an appointment for the next week at 8:30am, 30 minutes before I was due to start work, and ended the call.

That appointment never happened.

I waited each morning for two weeks, for a call that never happened. Calling the number he used was fruitless as it didn't accept external calls. I know I should have called the clinic he formerly worked at in order to contact him again, but in all honesty the results and the stress and hopelessness they made me feel caused me to spiral severely and entertain suicidal thoughts to an extent that I hadn't in quite a long time. Each reminder of it was salt in a fresh wound, and ultimately it became too painful and strenuous for me to pursue it any further.

I received a missed call from the same number two months later, at 10am, on a day where I was at work and unable to access my phone. After that, he didn't contact me again.

So now I'm just wondering... How would be best to proceed? Do the NHS allow a second assessment, or is it something they only offer once? Is it best to forgo a diagnosis and work on coping techniques without medication? I'm currently in private CBT for my intrusive thoughts and low mood, which is where the therapist floated the idea that I could also be experiencing OCD. I don't think that explains the procrastination, inattentiveness, and general disorder and chaos of my life and coping techniques however. I'm still struggling with the administrative side at work, and even with their accomodations I'm concerningly behind on the tracking of all my key children. I'm also experiencing severe burnout due to the stress and overwhelm of putting all of my mental eggs in one basket and trying to function at work.

TLDR; The person who performed my ADHD assessment determined I don't have ADHD, just anxiety, and didn't contact me again at the time he scheduled in order to treat the other issues I disclosed at the appointment. Now questioning if it's worth pursuing an assessment again, or if I should just focus on my private CBT therapy.

I hope this isn't confusing to read, as I tried to cut it down in order to avoid it being a complete slog to read through. Please let me know if you require any further information, and thank you so much if you read this! (I know big walls of text can be tricky to parse through for a lot of people here, hahaha)