Which Assessment Pathway is Best? (Arrgh! Sudden rule changes!)

Hi,

I wondering if somebody could please explain to me / share their experiences of what usually happens post-diagnosis please? Like, do the clinicians just disappear from your life again? Or do they help guide you through accessing further support, check in on how you're doing every now and again and help you set goals and work towards them, etc? Besides neurodivergent stuff the only other experience I've had of a diagnosis process this complex or thorough was with the gender identity clinic and that involved a post-diagnosis process with a care plan which involved seeing how I got on with the hormone replacement therapy, talking through possible surgery options with the psychiatrists, etc. Obviously there aren't any medications for autism, but I gather that there are still possibilities (at least theoretically) for interventions like counselling, coaching, etc.

I find myself in the bizarre situation of having heard nothing for months and years now being offered assessments by two different places simultaneously, both NHS funded, and being asked to choose which one to go with. I was already nervous about whatever mysteries the assessment process might involve and whether or not I would gel with the psychiatrist or not and if I'd accidentally mask too much. And I'm worried because my mum passed away some time ago and my dad worked all hours when I was kid and was a bit distant from the childcare stuff and I'm the eldest sibling and my family never talk to each other about our feelings or personal struggles, so my "informant questionnaire" was pretty sketchy to say the least. But now I'm confused and overwhelmed by a bunch of bureaucratic rules which have suddenly emerged and I don't know what to do.

On the one hand I previously had an ADHD assessment with Psychiatry UK which went smoothly and process of adjusting the medication for that has gone okay and they're the ones who hold all of my patient data for my neurodivergent stuff. But on the other hand their website is contradictory as whether they do anything for autism beyond the assessment itself.

"Psychiatry-UK will only perform the assessment and recommend appropriate treatment and therapy."
"At present, we are commissioned for ASD assessments and treatment only."
https://psychiatry-uk.com/right-to-choose-asd/

Until Monday I figured that it didn't really matter anyway because whatever support they thought was appropriate but were unable to provide themselves by remote video calls, etc. I assumed would just get handed back to the NHS clinicians in my local area to pick up on. But then I received a really disturbing email from the local neurodevelopmental team which I'm struggling to get my head around and figure out if it's a serious problem or not and if I'm overreacting or not. Has anyone else had an assessment via Psychiatry UK and how smoothly did the process go?

Thanks!

Here's the email trail (personal information redacted).

To: Coventry Adult Neurodevelopmental Team (in response to their letter)

Hi,

I am still seeking an autism assessment. But I think this is now happening via a contract the NHS has with Psychiatry UK. You mentioned the existence of other similar "partner" organizations in your letter. I already answered many long form written questions sent directly from them and they gave me an appointment date in a couple of weeks time. However since they're a centralized national service then, if I am diagnosed, no matter by whom, it would be useful to be put in touch with local support services here in Coventry and to have a care plan put in place. I've already been diagnosed with ADHD by Psychiatry UK subsequent to my initial referral to you for ASD in 2020 and I am currently in the process of having the ADHD medication titrated.

To: Me

Please be advised that we are not commissioned to see patient’s we have not diagnosed, including those diagnosed by Psychiatry UK. Your care and ongoing support is dealt with through your GP in this instance.

Should you wish to pursue your Autism assessment through our service (including our Partner Agency, Problem Shared), then your post-diagnostic support for this, would be through our service for your Autism diagnosis only. Your care and treatment, including medication for your ADHD would continue to be through your GP only, as we are also not commissioned to provide medication for clients we have not diagnosed.

We would be grateful if you could advise whether you intend to pursue your Autism assessment through Psychiatry UK or through our service.

To: Coventry Adult Neurodevelopmental Team

I don't know what to say.

• I have no idea what skills, resources, connections, etc. my GP has available to provide post-diagnosis support and care.
• I have no idea what your procedures, facilities, actions, capabilities, amount of contact, etc. are post-diagnosis either.
• What actually happens post-diagnosis (either way), in real practical terms? What kinds of support can each party provide?

All I know is:

1) I seem to be a bit further along the process with Psychiatry UK than I am with you and I already put a lot of effort into completing their detailed questionnaires. But then if you're telling me that nobody who might be suitably qualified to provide practical support accepts diagnoses from anybody except from you then maybe that's the most important factor for me to consider?

2) Psychiatry UK are already treating me for my ADHD and people aren't just one label or one condition, they have a complex picture of overall health and living situation. ADHD and autism in particular are known to be two conditions which have a significant degree of interrelatedness, which is presumably why your department performs assessments for both. If I did see you then what do you plan to do? Would you at least seek access to my medical records held by Psychiatry UK so that you could get a clear picture of my overall psychiatric health? The notes of my consultations with them might contain information that's relevant with respect to either making or dismissing an autism diagnosis. Am I simply banned from mentioning my ADHD when talking to you? The symptoms of one condition can interact with and alter or compound the symptoms of the other. Psychiatry UK even told me that the ADHD medication might alter the presentation of any potentially coexisting ASD.

3) Your department wrote to me in May 2020 saying that you'd be in touch two years subsequently. When the time came to September 2022 and I hadn't heard anything further from you and you wouldn't even answer your phone other than with a recorded message stating you were seeing patients who were referred in Summer 2018 at that time (far in excess of your 18 week obligation by the way) then my GP and I started looking around to see what other options were available to us. Psychiatry UK would have assessed me already by now but they said that waiting until the dosage of my ADHD medications had been stabilized was the clinically correct thing to do before attempting to perform an ASD assessment. What was I supposed to do? What would you have done? I wasn't even sure if I was still on your list at the time because it had been so long since you'd made contact.

4) I don't understand your previous email. It doesn't make any sense to me. I don't see how one thing logically implies another in anything you've written. Why would you not want me to receive post diagnosis follow-up care from the people who have the most knowledge in how to do that in Coventry and who have the time to do that? You would rather leave my GP to struggle and fail at something which isn't their specialism rather than support them to support me? How is that effective or ethical? What does it matter if one person makes the diagnosis and another performs the follow up so long everyone involved is approved by the NHS and confirmed as operating within the standards of clinical excellence and working at the level which the NHS expects its doctors to perform at? Your department clearly doesn't have any moral quandary about the NHS outsourcing work to private providers because you've admitted that you do exactly the same thing yourself. The clinician which Psychiatry UK have booked me an appointment with even works a second job as the leader of an autism and ADHD pathway for an NHS trust in London, exactly like yourselves! Surely you must sometimes see people who were diagnosed by another unit because you only deal with Coventry and Warwickshire so what would happen if an autistic person freshly moved to Coventry from elsewhere in the country post-diagnosis?

Do you see why I'm so confused? Perhaps you don't understand if you're not autistic yourself. There's no sense of order in what you've written. It's just a list of arbitrary statements with no apparent joined up systems based thinking. How am I supposed to decipher what your core values are from any of this? How does any of this work together as a coherent system that works effectively for patients? Where is the compassion or the justice?

Your email made me feel extremely anxious as well as angry, sad and tearful, all at the same time, and I now feel myself rapidly sliding towards having a meltdown.

I always seem to end up stuck in these systems, be it NHS, state benefits or whatever that are supposed to help me but end up causing additional anxiety and failing to help.

I cannot possibly make such an important life changing decision until you answer my questions comprehensively.