I had to wait six months to get treatment for ADHD – I was one of the lucky ones

There’s now an eight-year backlog for ADHD assessment in much of the UK. Lucy SM Johnston offers a cautionary tale of leaving it too late to offer help to those who need it

Jessie J says her OCD and ADHD diagnosis has made her rethink her whole life (Getty)

Anyone want to play the neurodiversity lottery with me?

I’m serious – if you need an assessment for ADHD as an adult on the NHS, much will depend on where you live. The wait is bad enough for children (16 months on average) but if you’re an adult, the backlog in some areas of the country is so extreme it can now mean waiting lists up to as much as eight years.

All the while, adults with ADHD are at a far greater risk of both self-harm and suicide.

And that’s despite celebrities raising the profile of living with neurodiversity – like Jessie J, who revealed this week that she has been diagnosed with attention deficit hyperactivity disorder (ADHD) and obsessive compulsive disorder (OCD).

The singer revealed what I know only too well: that motherhood has “exposed” the conditions “a lot more” and admitted that her diagnoses had prompted her to “re-think about [her] whole life”. And she said she is now “embracing” her diagnoses, which have both “empowered” and “overwhelmed” her.

I understand exactly how she feels – but I was lucky. Only two trusts in the UK have waiting lists of less than a year and I was in one of them – North East London NHS Trust, take a bow – you saw me within six months. If you’re under the care of Blackpool, you too might have a fighting chance.

If you can’t afford to go privately and invest the best part of £1,000 for an assessment (with even more if you decide to go down the medication route) what are your options other than patience or abject despair? Meanwhile, your mental health can really suffer. The stress and trauma of trying to navigate a world you don’t understand can be immense and destroy what little self-esteem you’ve managed to cling on to.

The longheld male bias in medical research too means that women are again often at the bottom of the pile when it comes to early diagnosis, because we present differently (we are less disruptive as children and able to “mask” our symptoms better, so we are often overlooked). It goes some way to explaining the massive surge in late diagnosis in the middle aged.

These issues don’t stop at diagnosis. When I told a family member I had the condition, I was met with a dismissive: “Oh well, it’s very fashionable, these days.”

The rise of ADHD influencers and celebrities (such as Jessie J and Robbie Williams) highlighting the symptoms has promoted a far-greater awareness of neurodiversity in general, but if you knew how hard we struggle to keep afloat in life, the idea that anyone would willingly choose to surf this “trend” is laughable.

During my exhaustive initial telephone triage, the mental health nurse quickly picked up on the change in my breathing and asked if I was OK. I was fine, I explained, but couldn’t just stick to one task and had started to run up and down stairs sorting out the washing, phone balanced in the crook of my neck.

It’s a long-running joke that sufferers will have a “laundry problem”: clean, unsorted piles often left for weeks – for me it was a tangle in the bath after putting the washing on up to three consecutive cycles because I never remembered to take it out (or that I’d even put it on).

How long had I felt this way? I had always felt this way. Even as a kid, I couldn’t revise for exams without a radio on – and often the TV, too. It helped drown out the incessant chatter of thoughts in my head. Looking back there were very clear signs.

After I spent just a moment explaining what life felt like inside my head – and the panic and stress of living like this for so long – the nurse told me not to worry. She said she’d get me urgent help. My symptoms had me at breaking point.

The relief at being seen so swiftly is indescribable. I’d lived through to my fifties with an innate sense I was somehow “broken” or misfiring; unable to complete the simplest of tasks and haunted by the view that I was “just not trying hard enough”.

It drove me to severe clinical depression in my early teens, which was undiagnosed until a decade later when I had a breakdown. I had another in my forties and was prescribed anti-depressants. But on both occasions, doctors were treating the symptoms without looking for the root cause.

Sufferers will often have been self-medicating with alcohol and drugs for years to regulate themselves, so when doctors offered me Elvanse – a hospital-grade form of legal speed – it felt like being given a lifeline.

A friend who was diagnosed six months before me explained it like this: “You know when you’re sitting on the end of the bed thinking about things you have to do? Well, when you take the meds, you just get up and do them.”

This seemed like alchemy. I had to try it.

She was right. I suddenly realised how people kept their houses clean and organised and not the “obstacle course” chaos I left in my wake: full glasses on the edge of surfaces, dishwashers left half emptied with the door open, unfinished tasks everywhere.

Even with a prescription, it wasn’t plain sailing and after the roaring start I came to a halt again as a worldwide production shortage took hold. Scrabbling around for a supplier, I even considered the dark web – but how would I even know what I was getting?

Don’t get me wrong, the pills are not a magic bullet. You still have to point yourself in a direction in order to get the task done, but it is no longer an impossibility. Am I still late? Yes. Am I still scatty? Yes.

But internally, there has been a notable shift: the self-critical condemnations have been replaced by compassion and a tentative optimism. I joke that I’m like a 1950s American housewife on “uppers” – but at least I don’t hate myself as much.

Progress and self-acceptance count for a lot, even if I do still grind my teeth a lot. There may be no clear solution to ease the backlog in rising numbers of referrals, but at least it’s made evident how many of us desperately need help – and the impact of leaving people to suffer.