I’m only taking my ADHD medication twice a week due to the shortages

I've been rationing my medication Elvanse since September.

To live with Attention Deficit Hyperactivity Disorder (ADHD) in the UK is to be continually let down. 

Since September last year, tens of thousands of ADHDers have gone without or with limited access to the medication that they need to function, due to what the Department for Health and Social Care says are ‘increased global demand and manufacturing issues.’

Despite that same department claiming the situation would be resolved by the end of December, reports this week suggest the problem is continuing, and the impact of that is very real.

I know that from my own experience, having been rationing my medication Elvanse since September, only taking it on the days that I feel are ‘most important’ since I have no idea when I might be able to get hold of my next prescription or when the shortages might end. 

In ‘normal’ times, I’d take my medication every day, but now I take it two or three times a week depending on what’s in my schedule. 

As a freelancer, I’m lucky to be able to squeeze most of my meetings or important work into a few long days (when I take my Elvanse) rather than having tasks spread out across the week.

Multiple times, I’ve had to ring around as many as a dozen pharmacies to be able to fill my prescription and have waited upwards of a month to be able to find somewhere that had them in stock.

It doesn’t help that admin tasks like these are already a sticking point for us ADHDers by nature.

So I’m struggling, and I’m not alone.

A survey carried out by ADHD UK in November has found that 92% of those affected by the shortages were concerned about the impact on their learning and future prospects, 75% were concerned about the impact on their relationships, and 44% thought that they might lose their job.

And that was almost six months ago – with no clear end to this crisis in sight, things are only going to get worse.

Despite the scale of the problem, I’ve had very little contact from my GP or medical team to check in on me, offer additional support, or keep me updated on the shortages – one text telling me about the issue back in September, then radio silence.

For me, this crisis makes me feel that the government and healthcare services in the UK just do not take ADHD seriously as a disability.

If those in power realised just how debilitating and difficult ADHD can be to live with, and just how necessary many of us find medication for functioning and survival, I believe things would be different.

If the impact of ADHD was recognised, I don’t believe they would really leave us with no medication, no support, and no firm answers as to when things might change.

If they understood what we truly go through, there would be outrage, disbelief and a demand for better to ensure this situation never arises again.

I went undiagnosed with ADHD, despite reaching multiple mental health crises, having to drop out of school and leave jobs, and spending four years under NHS mental health care.

ADHD isn’t just ‘being a bit hyperactive’ or ‘struggling to stay organised’, it makes it extremely difficult to regulate my emotions, or get anything done. 

It also often leaves me stuck in cycles of overthinking all of the things I need to do or plan but none of the executive functions to actually get started.

Eventually, in 2021 at the age of 24 I had to turn to a private clinic for a diagnosis – which is a huge privilege and inaccessible to the vast majority of people – because of the lengthy waiting lists for an NHS diagnostic assessment.

If I hadn’t been in the position to pay for that diagnosis, I believe I would still be on that waiting list to this day, struggling to function. This is the case for so many – and I’ve spoken to women, people of colour, and those marginalised for their gender, who say the problem is much more acute for them. 

It is estimated that 1.5million adults have this neurodevelopmental disability, but only 120,000 are formally diagnosed.

Getting diagnosed with ADHD and being able to access medication was the first time that daily life ever felt manageable for me.

Medication allows me to function, regulates my emotions and improves my focus, while preventing me from feeling overwhelmed and paralysed by the simplest of tasks.

ADHD medication transforms my life from feeling grey, difficult and disheartening to giving me access to the full rainbow of emotions and experiences.

But that is now at risk, and as you can imagine, having my access to this medication potentially taken away from me for an indefinite period is incredibly anxiety-inducing and stressful.

ADHDers, like all of society, deserve access to proper support, healthcare and medication – and the fact that we don’t have this, and that so little is being done about it, is completely unacceptable.

Too many of us are left undiagnosed, unsupported, unmedicated and unheard. Many more have received no confirmation of when these medication shortages might end, and no offers of counselling, therapy, or holistic support to help us in the meantime.

It’s time that those in power treat ADHD for what it is – a disability that needs proper support, accommodation and care – and go about solving this crisis to ensure that people like me can live the lives we deserve. 

Do you have a story you’d like to share? Get in touch by emailing jess.austin@metro.co.uk. 

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