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Extract from Newsletter: NHS Diagnosis, June 2010

So there I was last Thursday, driving across London like a maniac, arriving late (only 15 minutes late mind you) and rushing into the lobby at the Maudsley ADHD Hospital in South-East London. The Maudsley is the primary clinic in London for diagnosing Adults with ADHD.

Self-diagnosis

My initial ADHD diagnosis was my self-diagnosis, age 42. It started with reading the entry for Sluggish Cognitive Tempo on Wikipedia, then comprised many months spent in hyper-focused research and self-contemplation. It was a revelation for me, as it is for most adults, seeing my ADHD problems and differences so clearly laid out before them. Self-diagnosing your ADHD is not like someone determining a stomach ache is cancer by spending too long on symptom checkers. The issues are too random, too diverse and too complex to possibly read yourself into having ADHD. Besides most ADHD adults research extensively and usually know more about ADHD than most GPs and many psychiatrists by the end of it.

My first diagnosis, at the Priory clinic

I was keen to try medication, however, and for that, you need a medical diagnosis. At that time the UK NHS had no provision for adults, only recognising adult ADHD in 2009. So my medical diagnosis ended up with a private psychiatrist, Dr A., who had treated my depression and missed my ADHD several years before. Out of desperation, I had asked Dr A. for a referral to an ADHD psychiatrist, only to be informed that he was now an ADHD specialist himself. Ironic and a little upsetting, he nevertheless was able to help me with an ADHD diagnosis and then medication.

With Dr A., I trialled and titrated several ADHD medications including Adderall, Guanfacine, Ritalin and Dexedrine. Adderall was like a kick up the back-side, very activating (uniquely so, for many people) but it was too hard on my system, giving me minor heart flutters, tachycardia. Ritalin made me depressed. Guanfacine helped me go to bed on time for the first time in my life. Dexedrine brightened my mood but didn’t help with procrastination and left me feeling flat.

After more than a year of experimenting on my self, spending several thousand pounds on drugs (Adderall is more than £10/pill in the UK) and many private consultations, I was left feeling more and more disappointed and finally gave up on ADHD medications. It took a few years before I gathered the strength to try again. I visited my GP with my private diagnosis report but he insisted I needed an “official” NHS diagnosis before we could proceed any further.

My second diagnosis, at the Maudsley NHS ADHD clinic

I had waited exactly a year for this NHS appointment and had brought with me a folder containing ten diagnostic assessment forms! The ten forms were in addition to the four other that my 70 year-old mother and I had each already sent in months earlier! I also was armed with ADHD diagnosis confirmation letter from my private psychiatrist and several school reports with great grades but with endless ADHD criticisms “so noisy”, “disappointing results”, “not paying attention” and “not reaching his potential” style comments.

Over the intervening years, I had become an adult ADHD coach and now ran a large ADHD support group and had coached dozens of ADHD adults. I was immersed in ADHD, presenting, writing and often helping adults who have just started on their own ADHD journeys. I would discuss diagnosis and medications, work and relationship issues, procrastination, difficulties with planning/contemplating the future, co-morbidities like addiction, anxiety and depression. I connect well with with ADHD adults because I have the same challenges and can share my insights as to how to overcome them.

I found myself in a hospital interview with two young psychologists asking about my childhood experience. I cannot remember last week, let alone forty years ago. Did I find it hard to stay in my seat and not interrupt others aged seven? I think so, I certainly found it hard sitting through these 2 hours of pointless questions. I began to think that my diagnosis was in doubt. What would that mean to my coach credibility!?

Success, I’m disordered!

After the junior psychologists, I then had a much better interview session with a well-informed and clearly bright ADHD specialist psychiatrist. We chatted for a while, he read some of my school reports, talked a little about my history and then he thankfully confirmed my diagnosis. He was insightful about my ADHD, he understood my low-activated, often bored variant as: ADHD Combined Type – sometimes inattentive and sometimes hyperactive. I was treated with respect and we had a reasoned discussion about medication and titration, he listened to my views and we agreed together on how to move forward, thank goodness!

But then the psychiatrist opened my medical file and sighed, looked over at me and explained “I’m afraid your PCT has only funded this visit, they do not support any follow-up whatsoever”, this means that my GP will have to titrate me herself (i.e. increase my Concerta dose over the next weeks) and not every GP is prepared to do this. It certainly means I won’t be easily about to change my medication dosage or type. The psychiatrist explained with obvious frustration that this happens in many cases, and that he would write to my GP explaining the titration process.

I hope my GP will help me out but if she does not feel confident to do so then I will have a fight with my PCT. I can be focused and motivated when stimulated by anger and righteous indignation! I will let you know how the meds help me in the next journal. At the current rate of diagnosis, even with a conservative estimate 4% of the UK population, it would take the Maudsley 10,000 years to diagnose them all!

READ 2: LOST FOR WORDS ON CONCERTA

Andrew Lewis

Andrew Lewis is an Adult ADHD Coach, writer and founder of SimplyWellbeing. He has over 16,000 hours of experience in coaching over 600 adults with ADHD, including many ADHD business professionals and ADHD creatives. Andrew ran a major ADHD support group and even an ADHD diagnostic clinic for a while. Andrew is an adult ADHD Coach backed with business expertise from a twenty years career in software, from roles in programming, through marketing, sales and to running a few software start-ups.

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