How can I be a good advocate for my partner in a medical setting?
July 10, 2014 2:03 AM Subscribe
My partner and I have a strong suspicion that he may have ADHD. We're based in the UK and are struggling within the NHS system to get him a diagnosis. He has another medical appointment today and wants me to come in with him. How can I be a good advocate for him (in six hours' time) in what feels like a somewhat broken system? More details inside.
I am very much not a doctor, but I've lived with someone (as housemates, rather than romantically) with severe inattentive ADHD and have seen significant overlap between the issues my former housemate has struggled with and what's going on with my partner. I don't want to distract too much from the specific question here by going into tons of detail on my partner's symptoms, and I don't want to diagnose him myself when I'm far from qualified to do so, but the symptom checklist for ADHD fits him like a glove. These symptoms are causing issues for him in terms of work/education (his job is washing dishes in a Thai restaurant four hours a week; he wants a career in music and is both passionate and talented, but really struggles to make progress on the aspects of this which require organisation, which is pretty much all of them at the stage he's at with his music; he dropped out of university after the first year; at school, his teachers consistently branded him "smart but lazy" when he was actually massively struggling to focus) and also in terms of our relationship (my job is insanely busy, full-time, often stressful and requires me to be on top of everything like nobody's business; my partner struggles to focus on household tasks to the extent that the entire cognitive burden of running our house and our lives is on me; I have my own mental health issues (see previous questions), and the stress of having to be The Person Who Makes Sure Everything Gets Done is difficult to handle on top of my job).
My partner approached his GP last week to discuss his attention issues. The way the system works in the UK is that a GP can't diagnose ADHD and should refer potential cases to a psychiatrist. The national clinical excellence guidelines for the treatment of ADHD or suspected ADHD in adults state that best-practice treatment for a patient presenting with my partner's symptoms is a psychiatric referral to someone who can diagnose attention issues in adults.
However, when my partner saw his GP last week, she said that she thought his issues were "behavioural rather than chemical" and that she wanted to refer him to a psychologist rather than a psychiatrist to work on the behaviour stuff. This wasn't what he was expecting, he admits it blindsided him somewhat and that he panicked and forgot to ask for what he wanted (a referral to someone who can diagnose attention issues), and he came out of the appointment very disheartened and feeling as though he'd been brushed off.
The GP's take on his problems sounded odd to me, especially given that my understanding of ADHD is that it's a brain issue that manifests primarily behaviourally. Adult ADHD wasn't recognised by the NHS until very recently (as in, the last couple of years), and it strikes me as possible (perhaps likely) that this isn't something that his GP is massively familiar with - I don't have a huge amount of confidence in her assessment of the situation. I should note here that it's entirely possible that my partner didn't do a great job of articulating the problems he's been having, partly because he's internalised a lot of guilt and failure around not functioning the way that 25-year-olds are expected to be able to function and thus tends not to want to tell people exactly how bad things are as it sends him into a shame spiral, and partly potentially because it's just hard to talk to doctors sometimes.
We're open to the idea of psychological/behavioural intervention as well, but I'm not sure this is a job for therapy alone, and he would likely massively benefit from medication, which a psychologist can't prescribe.
The GP asked to see him again in a week, and he has another appointment booked for this afternoon. He's asked me to come in with him this time to make sure there's someone else to hear what the doctor is saying and push for what we think the right thing for him is. I really want to be able to do a good job of this, help him out and make sure he gets the best possible treatment.
The complication here is that I'm not in the best place myself depression-wise at the moment, and I've always struggled to advocate well for myself when discussing brain problems with doctors. I'm fundamentally kind of scared of them - under the NHS system, the GP is the gatekeeper of all specialist services, and I'm really worried that I just won't be able to stand my ground and push for the referral that we both believe he needs. And that if the appointment today doesn't have a more positive outcome, that we'll both get super disheartened about the whole thing and it'll be much harder to get momentum going behind the process again.
I realise I've touched briefly on the way our relationship and our lives work at the moment. I should be clear that I'm not looking for recommendations to get out of this relationship or to push my partner to contribute more financially or to the running of the household - I see those goals as potential outcomes of getting his attention issues addressed, but they're certainly not dealbreakers for me at the moment. I've seen him try and struggle to get better at this stuff and address it on his own to the point of despair, and I'm convinced it's an issue that goes deeper than laziness or being unwilling to do more stuff. He really, really wants to, and yet he can't.
So - does anyone have any advice on how to leave a doctor's office with the outcome you're hoping for? Or how to be assertive if and when the doctor makes it clear that they're reluctant to give you the outcome you want? Is it best to talk from facts (e.g. stress the best practice guidelines) or argue from emotion (the toll it's taking on him and, indirectly, on me)? I really have no idea how to approach this conversation.
I've left this kinda late, as the appointment is in six hours, but any advice anyone has would be extremely gratefully received!