Adult ADHD diagnosis in the UK

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 £600 to £1,200.

NHS ADHD diagnosis

To get a UK NHS diagnosis:

AADD maintains a partial list of adult ADHD Specialists and Clinics, 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!

Difficult doctors

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.

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 £500-£1,200 in London. Sometimes diagnosis is separately priced from titration, so do check as titration can be as expensive as diagnosis.

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.

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.

New med on the block: lisdexamfetamine

If methylphenidate based medications like Ritalin or Concerta don’t work well for you, then you could ask to try out a new dexamfetamine variant called lisdexamfetamine. Doctors often irrationally fear dexamfetamine, which I have never really understood from the clinical evidence. GPs seem unconcerned when regular painkillers like aspirin kill tens of thousands every year but are horrified by dex! In large part they are heavily influenced by the UK prescribing regulations, that deem dexamfetamine more dangerous and open to abuse. Consequently, doctors have to sign especially restrictive prescription forms for dexamfetamine based drugs.

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.

Off-label prescription

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 North Bristol 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 your 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 personal 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!  Many ADHD adults give up their ADHD meds after fighting hard to get them due to side-effects, difficulty obtaining prescriptions or forget to continue! Post diagnosis there are usually many life and work changes needing to be made but following the conventional advice still won’t work, even taking ritalin. Successful ADHD adults come to realise that it’s far better to understand, accept and embrace their ADHD than fight against it. So they focus less on problems, more on strengths and being grateful for what you do have. They accept shortcomings. They figure out sympathetic, ADHD-friendly strategies and stop pushing boulders up hills. They embrace their differences and live life aligned with their ADHD values and interests.

Coaching

Coaching can help. If you want to make changes it really makes a difference to have someone to discuss them with, to formulate new approaches and to commit to their success. With coaching there is someone to help you stay on track as you make serious changes and form new habits. 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.

Support groups

There is an amazing connection in sharing a space in person or on-line with other ADHD adults. It can be extremely helpful, reassuring and even inspiring to hear the stories of other people with ADHD. Check out online spaces on Facebook and Reddit, or check google for in person support groups near you. In the UK there is a pretty good list here.

Therapy

If ADHD we are far more vulnerable to other mental issues like depression and anxiety. In part due to the more traumatic lives we have led but also due to our different neurology which makes us more emotional and sensitive. Before you can really address ADHD challenges you might more productively focussed on addressing these consequential but critical problems. Do make sure to ask your therapist about their experience in working with other ADHD clients as this is critical to having effective support.