Fuck you, Northern Ireland: An open letter to Robin Swann

Dear Robin,
When the Assembly receives the ADHD petition started by MLA Peter McReynolds on Tuesday 23rd April, you've got two choices. Sweep it under the rug or take definitive action. That action needs to start with properly commission adult ADHD services and in parallel needs to involve a plan on how to sort out the issues around treatment.

The lack of adult services (and the horrendously slow service for children) isn't just shocking or ridiculous, it's inhumane and a downright fuck you to the whole of Northern Ireland.

Right now those people who are undiagnosed, those people who want and need a diagnosis to get the help they so rightly deserve – be it therapy, psychotherapy, social skills training or medication (or a combination of all) – feel like they've been left in some sort of purgatory for the sins of others.

I'm sure there are people who could articulate the multitude of reasons why many of us are in ADHD purgatory way better than I can. But let's not hide behind one of the biggest elephants in the room – it's big and white and sits on a hill – Stormont. This crisis has in part been fuelled by a political vacuum. In the past seven years we've had 1,483 days without a government, or to put it in terms you might understand better, around half the time of the current waiting list for adult ADHD diagnosis (though that's being kind given no funding exists to move anyone through that waiting list).

So for those who need a diagnosis, under our current structure they won't get it on the NHS. End of. There currently is no lifeline to hold on to, no hope on the horizon. Left to fucking languish, struggling to get help that is never coming.

You'd think it's simpler for a second group – those who can afford (or maybe can't, but still find a way) to get a private diagnosis. A number of people have reached out to me after being told by private companies that they don't have capacity to take on new clients. So even if you have the privilege to be able to afford to go private, that isn't even a guaranteed option.

Then there's a third grouping of people – those who have managed to get a private company to take them on as a client and those who have private medical insurance. I am a walking privilege bingo card. Aside from being white and male, I have private medical insurance because I'm in a job that requires me to pay for it every month. Amazingly my insurer added cover for ADHD diagnosis and aftercare late last year. What a win, I hear you say, Robin.

That's what I thought too... but for that third grouping, everyone goes through a similar journey that I went through in the past two weeks. I got an email with details from my insurer on what the next steps are to get medication:

a) I need to get in touch with my GP to get some checks to confirm suitability for medication

b) a psychiatrist (paid for by my insurance company) will then arrange an appointment to discuss and potentially prescribe medication if that psychiatrist believes it's right for me

c) I'd then enter a period of titration, which is essentially a period of keeping an eye on mood and weight changes and other things (which all makes sense since ADHD medications are controlled substances)

d) following a stabilisation and optimum dosage found, the service would enter into a shared care agreement with my GP. My GP would then prescribe the medication on behalf of my psychiatrist while I attend six monthly reviews with the latter to ensure everything is as it should be. These six month reviews are covered by my insurance company for a two year period after which reviews "normally move to the NHS".

Sounds simple, right? Imagine my surprise when as I began to sort this out I received an email from the person looking after me for my insurance company which started "I am so sorry, I've just noticed you're based in Northern Ireland". Hmmm. Weird way to start an email.

They went on to tell me that they would no longer recommend I start medication because of this. Imagine, the third biggest private medical insurance company in the UK (with more than 1.2m customers) telling a customer that even though a psychiatrist they paid for recommended medication I shouldn't bother, because, this is awkward, well... Northern Ireland doesn't have its shit together. Here's some direct quotes in case you're interested:

"GPs in Northern Ireland require more tests from a psychiatrist and on some occasions they won't accept a private diagnosis. We don't recommend you start taking medication as this means you'd be liable for the cost of prescriptions for the entirety of taking the medication."

My next step is to ask my GP. If they, like the majority of GPs in Northern Ireland do, say they can't help, my next step is a well trodden path for many others. I need to go to a private GP who will charge a fee of around £25 per month to write a prescription.

Then, like a crack addict, I'll phone around chemists to see who is selling the medication I need at the cheapest price this month. The people I've spoken to who live here and are currently doing this every month have spoken of fluctuations of monthly costs of anywhere from £40-50 right up to £300.

I hope that by this point in my letter you might be thinking the same thing as me and the thousands and thousands of others and their families who are pleading with you to take some action and bring in change immediately.

THIS. IS. FUCKING. BROKEN.

I can't speak for the whole ADHD community, but I can speak to the pain and suffering that I've heard first hand from the huge number of people who've reached out to me privately. I can talk about the pain and suffering I feel.

We are unseen and unheard. Outside of a handful of people like Peter McReynolds and Paula Bradshaw who have stood up and asked questions it feels like no one gives a shit about what happens to us. We wonder simple, logical questions like "how can GPs outside of NI accept shared care agreements but not here?" and "why do NI GPs require additional tests no one else does?" and "why isn't there even a commissioned service here?".

An article on the British Medical Association's (BMA) website started "If ‘crisis’ sums up the health service in England, Wales and Scotland, then perhaps we need to invent a whole new word for Northern Ireland, where patients can wait five years for an appointment".

Somewhere ADHD asked someone to hold its coat and moved that dial to eight years. That article followed on with "On almost every measure, Northern Ireland’s health and care system performs worse than anywhere else in the UK. Waiting lists are proportionately much higher and rising – with more than half waiting more than a year even to get an outpatient appointment".

You're the Health Minister. You don't need me to tell you what you already know. Those within healthcare are doing a champion job at their roles. This isn't about doctors and nurses. This is about a broken system, not the people who are stretched within it. This is about a system whose strapline might as well be "Fuck you, Northern Ireland" because that's how it feels to us trying to navigate it.

When you receive Peter's petition next week, I implore you to take immediate action because a huge percentage of the population are suffering for the sins of Stormont and it just ain't fucking right.

Yours, John Ferris (a 47-year-old AuDHDer)