Three Years Later… and We’re Still Waiting

Three years ago, after our daughter was privately diagnosed with ADHD (on top of her existing autism diagnosis), we did what any parents would do, we contacted the NHS paediatric team for support.

What we needed was simple: Support. What we got? Silence.

Why We Had to Go Private

Like thousands of other families, we found ourselves in an impossible position. The NHS route wasn’t moving, so we went private. We paid for the assessment, paid for the follow-ups, and paid for a psychiatrist to get the right prescription. Eventually, our GP agreed to prescribe methylphenidate, which was a huge relief.

But there was a catch.

Every six months we still have to pay for psychiatrist reviews, otherwise the GP won’t continue prescribing. In other words, we’re effectively paying a “subscription fee” just to keep our daughter’s medication in place.

It’s not Netflix. It’s not Spotify. It’s ADHD medication.

The Letter That Broke the Camel’s Back

Fast forward three years, and a letter finally arrives from the NHS team. Great, right?

Except it wasn’t.

The letter basically said our daughter could now be transferred to another provider, Xyla… for an assessment.

An assessment. Three years later. For a diagnosis she already has. For medication she’s already taking. For reviews we’re still paying for privately.

If we weren’t so tired of banging our heads against this system, we’d probably laugh. Instead, it just feels insulting.

The Bigger Picture

Our story isn’t unique. Families across the country are stuck in the same loop:

• Go private because the NHS wait is unbearable.

• Get the diagnosis, pay for the psychiatrist, fight for the prescription.

• Years later, get offered an “assessment” you don’t need.

• Still no proper NHS support with the ongoing reviews.

It’s not just frustrating. It’s broken. And it’s unfair.

Why Advocacy Matters

This is why Edvocat exists. Because behind every diagnosis and every prescription is a family that’s been left to navigate this maze on their own.

We need services that actually help, not endless paperwork and circular referrals. We need children’s needs taken seriously the first time, not years down the line.

Most of all, we need to stop treating families as though they’re asking for something extra. Safe, consistent, affordable care isn’t a luxury. It’s the bare minimum.

So if you’re fighting the same fight, know this: you’re not alone. And until the system changes, we’ll keep pushing for the support every child deserves.