ADHD and lack of NHS cooperation

[ATieLikeRichardGere]

So about a year ago I got a private diagnosis of ADHD combined type. I have total confidence in the diagnosis. It makes everything make sense. I was so happy to finally have the answer to the story of my life. Initially when I raised it with the GP they said they would take on shared care. I was so pleased. Finally.

But I have other mental health issues and due to the pandemic and very unfortunate personal circumstances, these were exacerbated. My GP then said she agreed I needed psychiatry support but didn’t think the ADHD diagnosis would stick. I received one psychiatry appointment where they prescribed sertraline and the psychiatrist said there would at some point be a follow up to assess underlying issues - he said it could be ADHD but equally it could be autism or a personality disorder.

Now, I don’t want to be a bad patient but, it’s definitely ADHD. I don’t feel I can take the sertraline because it isn’t what I need and I don’t want to deal with the many other issues that come with starting an antidepressant, to add to my many current problems. I picked up my first prescription but just could never bring myself to take it. I would probably have needed a refill by now - not sure if anyone is tracking that I’ve not claimed it but I imagine not. Moreover, I’ve had no follow up from anyone, and I don’t think it’s acceptable to just be sent off with a prescription like that and no checking in…

That was a couple of months ago. I’ve heard nothing. I’m torn between feeling I should be grateful for any scraps of help and feeling enraged that I am being given crap, irresponsible and incorrect help.

What should I do? I need my proper diagnosis recognised and treated.

Also to add to that. I can’t actually take ADHD meds just now for other medical reasons so I still need another type of support anyway - but I don’t even know what that should be. If anyone has recommendations of anything at all that would be great.

So part A is your mental health needed help from a psychiatrist- that's what you were referred for and offered the sertraline.
Part B is you want treatment for your adhd. Go to your GP and get a separate referral for that

Unfortunately the two things aren’t genuinely separate, but the psychiatrist said the ADHD can’t be assessed until I’m at “baseline”. However, I won’t be at baseline without ADHD help, because untreated ADHD is contributing to anxiety etc. And my GP won’t make a separate referral.

Sertraline isn’t an ADHD medication. It’s for PTSD, cPTSD or depression. You mentioned you saw psychiatrist for MH issues other than ADHD, so I would assume the Sertraline is to address these other issues.

And it’s normal to address other MH issues before starting any ADHD medication because PTSD, cPTSD, or depression also cause lack of focus, inability to concentrate, anxious/hyper feelings, etc. typical of ADHD. So right now, you are experiencing double symptoms.

They don’t want to over medicate you. So they address the MH first, and then when you are stable, after that they see how your concentration, focus, hyperness is then and only then do they know how much or what ADHD medication will help you.

Then there’s the issue that the ADHD assessment waiting list is very long (years) and I shouldn’t need to be on it because I have a diagnosis I from an NHS psychiatrist. I just got it privately. This is strange and unnecessary gate keeping.

Psychiatrists diagnose and treat ADHD, too, though. They should have been able to take a broad look at your difficulties and treat them appropriately.

Unfortunately, that’s often not what happens within the NHS. My personal experiences is that they are very quick to prescribe SSRIs as a sort of cure-all and send you on your way.

Are you able to write a letter to your GP explaining what you have said here and asking for better help and advocacy? I find the medical profession often respond better to requests for help than to complaints on the first instance.

My experience of adult ADHD is that of you’re not going down the medication route, there is no other help available on the NHS. Private therapy and self help are the other options. Don’t dismiss self help. There is a lot out there now online and I’m finding a lot of relief through reading widely around ADHD and sharing strategies with other adults with a diagnosis.

@PlanDeRaccordement

That’s what they think they are doing but in practice it’s making everything much worse. I shouldn’t need to reprove my diagnosis.

And yes the sertraline is for the anxiety aspect but for various reasons including the fact that I’ll never be able to take it consistently due to the ADHD I won’t be taking it.

So this protocol isn’t going to work for me.

But the question is what do I do??

@Cinematik writing a letter is actually a very good idea which I never thought of. Thank you for that.

@ATieLikeRichardGere

Unfortunately the two things aren’t genuinely separate, but the psychiatrist said the ADHD can’t be assessed until I’m at “baseline”. However, I won’t be at baseline without ADHD help, because untreated ADHD is contributing to anxiety etc. And my GP won’t make a separate referral.

This is exactly it. They have to address one before the other: MH or ADHD. They can’t address both at the same time because that leads to over medication, and these medicines do have side effects to kidneys, liver as well as fatigue, brain fog, etc so you really don’t want to be over medicated. Over decades of practice, they know it is better to tackle the MH before the ADHD.

You may be thinking they should tackle the ADHD first, and MH second. But you don’t have the clinical experience to realise its the other way round usually works best. They want your MH tackled so they get a baseline reading of your ADHD symptoms and not ADHD symptoms artificially inflated by poor MH.

And yes the sertraline is for the anxiety aspect but for various reasons including the fact that I’ll never be able to take it consistently due to the ADHD I won’t be taking it.

You’d have the same problem with ADHD medication. The answer isn’t to reject the Sertraline but put in place a workaround as you’ll need to be able to take ADHD medication consistently too when the time comes. You can set an alarm on your phone as a reminder, have a carer call to remind you or bring you the medication with a drink every day.

@PlanDeRaccordement

But I’ve lived in my own mind for long enough to know that it’s not going to work for me. I’ve failed to take so many ssris already. That’s why I was ultimately forced to spend money I couldn’t afford to get the right diagnosis, after many years of ineffective and inappropriate diagnosis and treatment. But no one is listening to me. The real issue is that because I don’t fit a stereotype so I’m not believed.

I'm not sure what support they actually provide for ADHD other than medication. Certainly with my daughter medication is the only thing we've been offered. Counselling, emotional support just doesn't seem to be an option unless you seek it privately or through a charitable organisation.

Why can't you take your medication consistently? Is it a question of remembering because there's ways around that as a previous poster has already said.

My daughter doesn't always take her ADHD meds. It doesn't need to be every day to still help. They enter and leave your body quickly so don't really have a cumulative effect anyway.

Also the psychological impact of having my diagnosis (temporarily I hope) taken away from me has actually beenhuge for me and so difficult to cope with. It caused me first sadness and despair and then such a sense of both anger and fear. I am regaining a sense of fighting for my own needs after feeling a period of total defeat, yet I am still struggling to deal with this even now. So and words of comfort on that front would also be much appreciated if anyone has gone through the same.

@Lindy2

I wish I could explain why the consistency is difficult, but to say that I forget is an oversimplification. I can easily ignore 1000 alarms or turn them off without thinking.

However as you are saying, that’s not so important for ADHD meds as it’s not cumulative. But for SSRI the withdrawal is brutal!

Thanks for that info. Really hope your daughter gets all the support she needs.

@Cinematik is there any particular reading you would recommend? The main book I have is CBT for Adult ADHD by Mary Solanto. I actually bought it because I knew I needed executive function help and didn’t really have any idea about ADHD, assumed I didn’t have it but that the book might help anyway, and then when I read the book I had the OMG lightbulb moment. It’s a great book and the strategies have helped but I also struggle to stick to many of them - you are meant to do them as part of group therapy to help the commitment. So definitely open to other recommendations.

I have had diagnoses given and then replaced with others a few times. I started out with Borderline Personality Disorder, then had Psychotic Depression, now (depression free), I am down as having schizophrenia and ADHD, but I’ve recently been referred for ASD assessment which could be added on to or replace the ADHD. I think over time, and as they gather more data, they untangle overlapping conditions as you go so it’s fairly common to have diagnoses changed the longer you are in the system. Especially if a complex case like you where it is definite you have multiple overlapping conditions.

I’d take your ADHD diagnostic report with you when you are given a NHS psychological assessment. The psychologist will take that into account when assessing your other MH issues, and most probably keep it. You can insist on them not dropping that diagnosis in their paperwork unless/until they formally reassess you for ADHD and find none. They usually have a medical history blurb up front and it should say “on such and such a date, Dr so and so assessed Ms Gere and gave a diagnosis of ADHD” you can insist they at the very least do this, so it’s still there in your records with them.

Thanks @PlanDeRaccordement it makes sense to insist they keep at least that.

I get that diagnoses shift. I’ve been diagnosed previously with OCD, GAD and depression. I definitely did have OCD at a young age and continue to have related traits and occasional waxing and waning presentation of this. Laterally though I am pretty sure that diagnoses of general anxiety and depression I have received have really been mostly reactive/secondary to undiagnosed ADHD which has been consistently missed due to stereotypes, no one ever asking the right questions, and me knowing nothing about it and thinking of it as a 6 year old boy disease. I feel in my heart of hearts so sure about this, and so sad when I think of all the things I have gone through or missed out on because no one recognised it and because I never thought to read about it due to my own dodgy assumptions. But it fits perfectly. To finally feel understood and then have that snatched away compounds the hurt of all those years and acute mental health challenges.

I have been assessed for ASD and cPTSD previously and found not to have them and I totally agree that I don’t have these conditions.

Being just sent away AGAIN with a packet of sertraline and nothing isn’t good enough though.

@PlanDeRaccordement And I really hope that your ongoing treatment and diagnosis is helpful for you. It sounds like you have been through a lot.

Being just sent away AGAIN with a packet of sertraline and nothing isn’t good enough though.

Totally agree! Sounds like you have been through the wringer. Yes, it was a long journey to prove to psychiatrists that my hallucinations were real and not attention seeking due to a personality disorder! I laugh about it now, but at the time it was very stressful. I am sorry you are going through that stress now as well, and I do hope you can get the care you need. Sadly, there is a stigma if you get a reputation of being uncooperative and I always had a fear they’d just refuse help/discharge me if I refused something they wanted to try outright. So I have “gone along” with medication I knew wouldn’t help me from the start...taken it, then gone back six weeks later to say “didn’t work, what’s next” (with no told you so).
Not sure how your medical people are, but that was a fear of mine.

I don’t know if I entirely buy the ‘we need to treat your mental health issues before your ADHD’ line.

I was incorrectly diagnosed with bipolar disorder before I received my ADHD diagnosis. That means I was also incorrectly medicated for several years.

My lifelong episodes of depression have lifted since I was diagnosed with ADHD, started viewing my issues through that lens and got a much better hold on my symptoms and behaviours.

@Cinematik I'd also be interested in knowing which resources you're finding helpful please.

In our case it's DH who has recently-diagnosed ADHD but medication wasn't recommended and we're struggling with finding strategies to help. Thank you 💐