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!
posted by terretu to Health & Fitness (10 answers total) 4 users marked this as a favorite
I would take the psychologist recommendation and go advocate for a psych referral from the psychologist. Even if you can convince your boyfriend's GP, the wait for evaluation is going to be months. A referral from a psychologist within your community mental health team to a psychiatrist within within your community mental health team will likely be faster in the end. And, in the interim, he or she may well be able to equip your boyfriend with a few tools to deal better with ADHD-like behaviour, regardless of a pending diagnosis, and he won't be left with no support whilst waiting to be evaluated.
posted by DarlingBri at 2:18 AM on July 10, 2014 [8 favorites]

I was just about to say more or less what DarlingBri said. A bird in the hand, etc.

Also, sometimes it can be better to let the medical professionals come to a diagnosis on their own. You have a gut feeling, but try to be open to that feeling being wrong. Doctors are human, and can be led by patients into making a diagnosis they might otherwise be hesitant to make.

Go in as a team and ask lots of questions, and if the response feels wrong or incomplete, keep asking questions. But try not to advocate for a specific diagnosis. If you feel that a doctor isn't listening to your concerns, then you can ask to see someone else.
posted by pipeski at 2:38 AM on July 10, 2014

It may be helpful for both of you to try to view this appointment (and future appointments) as part of a bureacratic process that is necessary to go through in order to make progress towards him being well. it will probably take time. You will meet a few hurdles.

Also: your doctor's judgement or dismissiveness is not relevant to the two of you personally-- they are just people themselves, and people who see a lot of patients, many of whom may think they have ADHD or some other illness and do not. This is not at all to say that you deserve to be viewed with skepticism-- you personally-- but to help you realise that a degree of skepticism about your interpretation of your partner's symptoms is in fact part of your GP's job. Your GP may be wrong. But if they are you can keep persisting with this (making repeated appointments, seeing the psychologist, asking for a second opinion) until you get the result you want-- which is a happier, healthier partner.

Take a breath and try not to see this appointment as antagonistic or adversarial. It will be helpful for your partner to have you there to remind him of things he may have forgotten to mention but less helpful for you to be a bundle of nerves because you are gearing up for a fight. Take a steady, persistent approach with the doctor rather than going in guns blazing. A patient, persistent approach is almost always the most effective one in this sort of context. I think the issues you have raised about the nature of ADHD and the doctor's last recommendation are quite appropriately phrased here. I would articulate those issues just as you have with the doctor. The same goes for the psychiatrist/psychologist issue. I would strongly recommend making a few notes about the questions you want to ask/things you want to clarify before you go in. Nerves can make everything disappear.

I also think the previous advice you have received about being open to the possibility of a behavioural or simply different diagnosis, and trying the psychologist route, are very sound.
posted by jojobobo at 3:19 AM on July 10, 2014 [1 favorite]

A good information service in the UK is ADDISS. Call them up, I'm certain they will be able to point you in the right direction.
posted by tel3path at 3:59 AM on July 10, 2014

Your GP likely sees a lot of people who don't have ADHD but would find that diagnosis advantageous (pending court appearances bring this out a lot). She proably also sees people who would quite like some free speed. Unfortunately GPs do get swamped by such a lot of rubbish that they sometimes get jaded, or miss cues. Don't take her attitude personally. Make it easy for her by writing a lot of things down in advance (people always forget to mention the most important thing when they actually see the GP) and by giving specific examples (so not "I'm always late", but "I lost these five jobs for lateness"). It's also possible that she is concerned that your partner has depression or anxiety masquerading as ADHD - there can be a surprising amount of overlap.

It's also true that behavioural help (checklists, routines, etc) is at least as important for people with ADHD as medication, and some people actually find it more helpful. So don't dismiss that out of hand - it certainly won't hurt. I would try to fixate less on tablets in general - not everyone finds them helpful, some people get lots of side-effects, etc. Even when they work they are not a magic wand, and the behavioural side still needs work.

The other thing is that it is EXTREMELY hard to get an appointment with a psychiatrist - even when people are actively suicidal or psychotic the GP often gets deflected. It drives GPs absolutely crazy, but it may well be that your GP knows she has no chance of getting a referral to psychiatry accepted, and she is doing the best she can in a broken system (I love the NHS, but NHS psychiatry is badly broken and has been for a long time; mad people are not sexy enough to attract funding). Is there even an adult ADHD service in your local area? There isn't one near my hospital (big, central London teaching hospital you would definitely have heard of).

I would go to the appointment assuming your GP is acting in good faith, and make sure she understands that this is a serious problem for your partner. Ask her politely if she thinks seeing a psychiatrist will be necessary for a diagnosis, or if the psychologist will be able to do that. If you have the money to pay privately for an initial consultation with a psychiatrist (will be about £250) you can say that that's an option if she thinks it would help (ie mention it in passing as an extra option, not in a "screw you I'm going private" sort of way).

Good luck! You are right, this is a really difficult system. Your GP is actually on your side in this, but is probably more aware of what is and isn't possible locally.
posted by tinkletown at 4:38 AM on July 10, 2014 [5 favorites]

Everyone here sounds correct. This is a sifting process that's part of rationing services within a huge bureaucracy that's often abused by people for whom an ADHD diagnosis gets them off the hook.

It can be really, really hard to get straight in front of a psychiatrist but a psychologist's appointment can be the next step towards that.

Be positive and assume that both your GP and the psychologist will advocate for him within the system. But they both want to make their own minds up before they do that - everyone in the NHS hates people self-diagnosing with a vengeance and whether you are correct or not isn't relevant.

In the meeting articulate and advocate for his symptoms but do not suggest or ask for a specific diagnosis. Work as a team and be polite and assertive but be open to the idea that their professional judgement may not match up with your layman's expectations, and that does not mean that they are mistaken. One way to interpret their decisions is to remember that they want to get people back out of the NHS system, and that means enabling people to get back to health.

But good luck and I hope things resolve happily for you both.
posted by dowcrag at 7:13 AM on July 10, 2014

Disclaimer: I don't have experience with the NHS, but I do have experience dealing with ADHD treatment and diagnosis as an adult, with an unfriendly healthcare system.

I would take the referral to a psychologist, and see if your partner can get a referral for a psychiatrist from the psychologist. It's possible that his GP is concerned that he has other issues like depression or anxiety which can sometimes be present alongside ADHD or manifest similarly to ADHD. Many people also find therapy to be very beneficial in treating ADHD, particularly dealing with the debilitating feeling of shame that can go along with feeling like you can't be a functional adult.

I would ask if the GP wants to refer to a psychologist rather than a psychiatrist because she thinks a behavioral intervention should be attempted before trying medication. There are real risks and side effects to taking medications, and at least in the US, stimulant medications are treated as controlled substances and there are many people who attempt to get a diagnosis so they can get a script for recreational use or sale.
posted by inertia at 7:22 AM on July 10, 2014 [1 favorite]

I'm an adult with ADHD, I am medicated for it, and I currently live in the UK, but my story of how I got my diagnosis and my meds is a bit more roundabout because I am from the US.

I won't go into the story, but the short of it is that your GP probably doesn't feel secure prescribing anything for ADHD because Adult ADHD isn't something that is really recognized in the UK. I got my diagnosis from the States, and was completely shut down by my GP when I asked her to continue my medication. She told me that "it wasn't a thing" in the UK, and that GPs in the UK don't prescribe for adults who have ADHD. She suggested that I see a non-NHS psychologist that specializes in behavioural therapy, but she was very adamant that she wouldn't give me the medication that I was on in the US.

I managed to overcome this by being really stubborn and eventually she caved and referred me to an ADHD clinic in my local NHS trust. It took about 3 months for the referral to come through, and even then I got lucky again because somebody cancelled their appointment and they were able to see at the last minute. I am now on a slightly different medication than I was before, but my ADHD is under control.

I'm not sure where you live, but this resource from AADDUK may be helpful. If you want to see somebody under the NHS, it is going to be a long and bureaucratic process, but as long as you start the referral process, you can wait it out!

I wouldn't hesitate about stressing about both the toll his ADHD is taking on you, and how he is suffering for it. Get a referral to a psychiatrist, not a psychologist. Look up if there is a specific person or a clinic in your area. I got pretty lucky, because the area I live in has a really great doctor who recognized my ADHD and was comfortable medicating me from the get go.

PM me if you want more details!

Good luck!
posted by the_wintry_mizzenmast at 11:02 AM on July 10, 2014 [1 favorite]

Thanks everyone - both for the great advice and for pointing out that adversarial was not the best way to go. I realised when reading a lot of these responses how much my expectations had been coloured by my own bad experiences with doctors about brain stuff, which helped me be calmer and more reasonable during the appointment.

It went really well. The doctor seemed genuinely concerned by the issues his attention problems have been causing both him and us, and is sending a referral to the central agency in our area that processes all mental health referrals (this is a different system than the last time I was referred by a GP near here to mental health services, which was about five years ago, so I wasn't really clear on how the system works now before today). They will then assess him and point him in the right direction, whether that's diagnosis, behavioural work, something else or a mix. I imagine it's still going to be a long journey, but we're both feeling a bit more confident.

Thanks again!
posted by terretu at 12:16 PM on July 10, 2014 [2 favorites]

While not dealing with the NHS, the US "system" makes it hard to get a diagnosis too. My ADHD was diagnosed by a counselor (kind of like psychologist lite), after I had been treated for over 3 years with a one visit psychiatric diagnosis of Bipolar. The behavioral work didn't help, but getting an outside opinion led to me getting off of meds that didn't help and onto ones that did. So there is hope.

Just to outline how bizarre a process it can be, I got my original unofficial diagnosis of depression and anxiety from a rheumatologist who listened when my GP had no clue.
posted by monopas at 1:40 PM on July 10, 2014

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