Diagnosis journal 3/4 – stuck in the airport lounge

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Extract from SimplyWellbeing Newsletter, January 2011

A couple of weeks ago I visited my GP to get my initial prescription of Straterra, a nor-adrenaline/nor-epinephrine based medication for ADHD. This followed my second visit to the Maudsley Hospital specialist ADHD clinic in November, four months after my diagnosis there and 16 months after I first visited my GP seeking an ADHD diagnosis. My psychiatrist at the Maudsley agreed in November 2010 to change my medication to Straterra, as Concerta (and Ritalin) had not proved to be very effective. I delayed changing medications before Christmas as I was nervous about side-effects.

In early January I saw my GP, he agreed my initial Straterra dosage and typed the details into his computer. That might have been it, so easy and my new prescription issued, but instead he sighed and said “oh dear!”.

Finding the right medication

Getting an ADHD diagnosis in the UK requires much effort: endless form filing, posting letters, chasing and even changing doctors, putting up with ignorance even insult and demands great persistence & patience – it seems to get diagnosed you couldn’t possibly be ADHD!

Less well understood is that once diagnosed, for some there may be a subsequent challenge – in finding a medication and dosage that helps manage your specific ADHD symptoms without unacceptable side effects of reduced appetite, loss of humour or creativity, insomnia, anxiety, irritation, mood swings or tachycardia.

For many adults, the initial prescription works really well but for a significant proportion of adults it takes time to find the right ADHD medication and to persevere with it long enough to overcome any side-effects.

It can be a long journey

Finding the ideal medication can make for a difficult end stage to their protracted ADHD diagnosis journey. With so much energy expended getting the diagnosis, months and/or hundreds of pounds spent, little education or support from their doctor, hope finally fades and many just give up – diagnosed yet unmedicated.

This seems very sad indeed, like booking and paying for a dream holiday, packing the bags, negotiating hostile airport queues, officious custom officers, being charged for optional extras, eating plastic food and suffering cramped seats – only to arrive at the destination exhausted and traumatised, to see grey clouds and rain out the airport windows, and miserably choosing to return home.

If at first you don’t succeed

Our previous experience of taking medications is usually just “take two pills a day until you finish the packet”, with ADHD it’s so much more complicated: different medications, with different effects, requiring different dosages for different people. Some adults respond to a small dose – some much larger; amphetamines work for some – narcoleptics for others doctors’ first choice of slow-release drugs work for many, but sometimes quick release may work better.

Science has shown ADHD medications to be very effective; but science fails to offer any help with identifying which medication works, in which quantity, for which person. Figuring that out is by experiment, conducted jointly between doctor and patient.

If you are seeing a private psychiatrist this process can become expensive with repeat visits costing hundreds of pounds. If you are with the NHS (institutionally ignorant of this process), there can be extreme delays as GPs have to seek additional funds to pay for return titration visits to your NHS psychiatrist.

Maudsley madness

So back to my GP’s “ahhhh oh dear”. He stared at his screen, keeping calm I said:

“what’s up, what’s that big warning square that’s appeared in the middle of your computer screen?”

It turns out that in my region of London, Straterra is classified as a secondary/tertiary level prescription, so my GP cannot prescribe it. The surreal logic is that since my region has no experience with prescribing Straterra, it defers to external expert ADHD services, but how will they ever gain the necessary experience?

For me there is only one such expert centre – the Maudsley Hospital but: (1) It does not prescribe itself but requests that GPs to do this, (2) It takes two hours for me to travel the Maudsley, (3) It costs my local region (PCT) around £500 per half hour consult there and I would need several more consults to complete titration! They say I have a disorder!!

I’m leaving the airport

My GP asked me to leave it with him. I have heard nothing back as yet, so I am getting ready once again to engage with the system, in my usual know-it-all, persistent, “pushy yet charming” manner, to get this resolved. I do not intend to get stuck in airport arrivals, I want to stay in my dream hotel, the one I have fought long and hard to get to.

It might be that the first hotel I stayed in had mosquitoes and a noisy disco below, but I still want to check out a few others before I give up and return home. Maybe, just maybe, one of them will have the right restaurant (with wheat free menu); Olympic pool; room with a view of city, deserts, seas and mountains; close to all the sights; unlimited TV channels, movies and computer games; free Internet access; and attentive yet invisible staff to keep me happy for a while. I’m still looking but I’ll let you know if I find it!

READ 4:: MEDS FAILED BACK TO OLD ME

Andrew Lewis

Andrew Lewis is an ADHD Coach, writer and founder of SimplyWellbeing. He has over 16,000 hours and 20 years of experience in coaching over 600 ADHD executives, ADHD business professionals and ADHD creatives. Andrew ran a major ADHD support group and an ADHD diagnostic clinic for a while. He is an ADHD specialist 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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