Sadly if it was easy, you wouldn’t need a guide
Despite ADHD being predominantly genetically inherited there is, no blood test for ADHD. In many countries, getting an adult ADHD diagnosis can be tough. It may feel like a daunting challenge. Having been diagnosed three times ADHD myself (twice privately, once NHS) and having run an ADHD clinic, I offer some thoughts here on getting an ADHD diagnosis.
ADHD diagnostic criteria give a fairly narrow picture of ADHD. If you want to discover what’s been missed, like about our volatile emotions, then check out my illustrated page. What is ADHD? is a comprehensive guide to the impact of low dopamine and weakened executive functions have on our decisions, values, and lives.
These guidelines mainly apply to England and Wales, but much of the advice below applies wherever you live. You can check out the European Consensus Statement on ADHD here.
Diagnosis in the UK
Diagnosis in the UK is performed exclusively by a qualified Adult ADHD Specialist but you may have to negotiate with GPs, psychologists, nurses and even psychiatrists ignorant of the science of ADHD. Responses from professionals you encounter may seem like pure anti-ADHD prejudice.
The support is there but thin on the ground, reaching a specialist with solid adult ADHD experience may demand perseverance. In England and Wales, adult diagnosis is based on the NICE Guidelines which were published in September 2008, prior to then Adult ADHD was not recognized by the NHS.
The NICE ADHD Guidelines sadly have done little to improve investment in ADHD services, which overall continue to be a disgrace. Specific NHS health regions do a better job, in particular, the Maudsley Hospital in London provides a national ADHD adult diagnostic service and provide an outstanding service to many adults across the UK.
There are many private psychiatrists, particularly in London who can help with an often speedier, more professional and understanding diagnosis, costs typically range from £300 to £700 and appointments are usually immediate.
What’s involved in the diagnosis?
ADHD diagnosis is usually a pretty thorough process. A psychiatrist will, somewhat subjectively, evaluate whether your ADHD symptoms cause you significant impairment. They will wish to rule out other causes like depression, anxiety or thyroid issues. They want to confirm symptoms have been present since childhood – old school reports may have to be found in the back of a cupboard. See some of my school reports here.
Frequently, supporting evidence from relatives is requested, sometimes by completing forms about you and your childhood and even to attend your diagnosis. Not easy when your parents may be elderly, forgetful and disinclined to label their grown-up child.
Clinical assessment usually includes ADHD questionnaires (like the DIVA here) and a structured interview with a psychiatrist. Expect the psychiatrist to investigate current issues you may have in a work, family and social context. Typically they will verbally confirm your diagnosis and follow up with a formal letter. Medication is usually the first and only treatment on offer.
Worth the effort?
Getting an ADHD diagnosis usually demands a lot of patience and some resilience, but is it a worthy investment in your time and perhaps money? Most ADHD adults will see their lives significantly improve post-diagnosis. Though ADHD medication can play a big part of this, it is certainly not necessary or the only solution. Great benefits come from our changed perspectives with the certain knowledge of being ADHD. Effective new approaches, new behaviours, and new plans come from these insights and from taking a new ADHD approach to life.
Private ADHD diagnosis
The private route is quickest and least painful. There are many independent psychiatrists who offer diagnosis and a few clinics. Private psychiatrists are usually very experienced with the wide range of adults who may have ADHD, both women, and men, sometimes highly intelligent and successful people too. They will screen for and seek to help with co-morbidities, like depression and anxiety since these are all too common in ADHD.
If you can afford it, private is usually the best bet for an informed, experienced and non-confrontational diagnosis. Costs typically vary from £300-£700 in London. Sometimes diagnosis is separately priced from titration, so do check.
Ultimately private is costly. Medications are expensive and you will have to pay for a monthly consult to collect the controlled medication prescription. In most cases, your GP will agree to prescribe on the NHS, if the private psychiatrist writes to them and agrees to provide shared care. This Shared Care Agreement means the psych takes responsibility and determines what the GP prescribes. Not unusual at all. Once set up, your only ongoing costs will be a 6 monthly or annual visit/call with your private psychiatrist.
NHS ADHD diagnosis
To get a UK NHS diagnosis:
- Make a 10-minute appointment with your GP and simply say you want a referral to an adult ADHD specialist for an assessment.
- Take along the DSM V Diagnosis Criteria, with the relevant symptoms circled, be ready to give some “extreme” instances of how they have negatively impacted you
- Take a copy of the NICE Guidelines along, so that if necessary you can show that the NHS fully supports adult diagnosis
- Confirm with your GP that you will call them a week later to see how the referral is going
AADD maintains a partial list of adult ADHD Specialists and Clinics. but a quick google should help too. If no local help is available, ask your GP for an out-of-area NHS referral, or to pay for a private diagnosis – ironically private diagnosis is significantly cheaper than a Maudsley referral!
If your GP refuses to write a referral to an adult ADHD specialist then make an appointment to see a different GP, again with the NICE Guidelines and your symptom list. GP’s are not qualified to assess for ADHD, all they need to see from you is a valid reason for them to request a referral to an adult ADHD specialist and a list of the symptoms should do that. If they refuse to make a referral, then the GP is in effect assessing you as not having ADHD, only a trained and qualified adult ADHD specialist can do this, not a GP. The easiest option, in this case, is to change GP or practice.
Finding the right ADHD medication
Once diagnosed you may be offered medication. The more experienced psychiatrists would agree that finding the right medication and the right dose can take from a few weeks to many months. If your specialist considers all medications to be the same it’s not a good sign! The three main drugs offered for adults are:
These medications vary a lot and even medications from the same family like methylphenidate: Concerta, Medikinet, Ritalin, Equasym – may affect you differently, the compositions are not identical and the fillers and dispersal methods vary.
UK NHS specialists tend to prefer to prescribe Methylphenidate first, Atomoxetine (Straterra) second and Dexamfetamine last. Which is odd since Dexamfetamine has the edge in clinical effectiveness with Methylphenidate second and Atomoxetine last. Unfortunately, many UK ADHD specialists don’t plan for lengthy titration periods, so if your initial medication does not work – be prepared to push to try out another.
Lisdexamfetamine is considerably safer than regular dexamfetamine. The manufacturers, Shire, link a lysine molecule to the dexamfetamine molecule rendering it inactive until digested. No option to sniff or inject it and a far smoother and longer action. Brand name in USA is Vyvanse and in Europe, it’s Elvance, a slow release dexamfetamine medication in a non-abusable form and licenced for children only (as usual) in Europe.
To date, most ADHD medications, are prescribed to adults “off-label”, not using the drug as designed/ licensed. Since almost all ADHD meds are only licensed for children, it means the GP has to bear some additional unwanted responsibility. A “shared care” agreement allows your specialist ADHD psychiatrist to shoulder responsibility, usually GPs demand one. See as example Barnet’s Adult ADHD Shared Care Guidelines.
ADHD medication journal
It’s hard to judge how the medications are affecting you, as obviously you are actively changed by their effect. We vary so much day to day, ADHD medication may make you feel like you are having an effective day but not outside your normal bounds. Daily changes in sleep, diet and mood can hide immediate benefits, so persist and assess over weeks not days. Don’t rush to find the ideal dose, take you time to see the subtle effects.
Try keeping an “ADHD medication journal”, give yourself marks out of five on sleep, mood, focus, procrastination, but make some specific to your specific needs from the medication, e.g. hours spent on report or no. times distracted. That way you can track progress more accurately and less forgetfully! Ask for meds feedback from friends and relatives, their responses may surprise you, they may see more improvements than you do – after all, perfectionism is a key part of ADHD!
When you have your next psychiatric consultation about your dose, you will be clearer and more convincing. If you can show your psychiatrist your daily medication trends, it will lead to you more efficiently and effectively finding the best drug and dosage.
Education and contemplation
When we figure out we are ADHD, it seems like diagnosis and medication offer a perfect solution. It may take a while to sink in, but there is no cure for ADHD.
Drugs can really help, but they won’t fix everything! In fact around 50% of ADHD adults give up medications within the first six months. Usually, there are many changes needing to be made but following the usual advice just doesn’t work, even with ritalin. Most ADHD adults come to realise that it’s far better to understand, accept and embrace their ADHD than fight it. That means less focus on your problems, more on your strengths and being grateful for what you have. It means acceptance of shortcomings. It means adopting sympathetic ADHD-informed strategies not pushing boulders up hills. It means embracing your differences and living a life aligned with your values and interest.
If you want to make changes it really helps to have someone to discuss them with, to formulate new approaches and to commit to their success. Medication makes it easier to change your life, it’s an enabler but a coach can help you quickly figure out what it is you really want to change and to do so effectively and consistently.