Having been diagnosed with combined ADHD at the age of twenty in April of 2022, I felt a wave of relief upon receiving an answer to the many questions I had been asking myself over the years. I suddenly felt affirmed that I had been right about myself. It was true that the things that I found near impossible to make myself do or stop myself from doing were not problems that other people had. I wasn’t just imagining that I was finding it harder than other people to keep my head above the water, I wasn’t just a lazy, disruptive, daydreamer as I’d so often been tarred as growing up, but I’d had something preventing me from achieving my full potential all along.
There were many emotions that I experienced surrounding my diagnosis; shamefully I say now that I was even embarrassed about it. I felt ashamed at trying to justify my diagnosis to friends and family who either had never heard of ADHD, or thought of it as the disability that only boisterous young boys have whilst at the same time I felt hugely frustrated over the wasted time, and struggles that I had faced whilst in the dark about it. I felt unjustly annoyed that my family hadn’t seen it, that my teachers weren’t trained to notice it, and how the aspects of it that had been glaringly obvious had led to me being punished throughout my time in education, and generally struggling. Nonetheless, I was promised that now that I knew, life was about to be very different, and I was pretty damn excited to find out what I’d been missing out on, having not been born neurotypical; my psychiatrist had told me on the day of my diagnosis to note the date because today was the day my life had been changed forever. Pretty promising right?
Or so you might think.
In reality finding out that you’re a neurodivergent person, of any kind, is not finding out how to become neurotypical- in fact, most neurodivergent people spend their whole lives already subconsciously masking their personality differences before finding out that they aren’t neurotypical. But I was expecting some magic cure, and the stimulant medication was meant to be it. This was not wholly the case. There are many variants of stimulant medications, and most people who decide to medicate their ADHD have to try many kinds before finding one that works; this as you can imagine is fairly difficult to manage for somebody with the condition. But this isn’t just frustrating, it’s deeply uncomfortable. Stimulant medications are strong, whether they’re treating your symptoms or not. Being on the ‘wrong’ medication is worse than simply being on no medication at all; learning how to help myself via medication has led to me experiencing severe withdrawals from the drugs, and also severe headaches and palpitations from attempting to routinely take them. On top of this, there is the mental strain that comes from a ‘crash’ in the hours following the medication leaving your system; this is a feeling of complete rock bottom, paired with severe physical illness at times, and in the worst of cases serotonin syndrome.
I haven’t yet got to the best bit of this, whereby everybody in your life expects you to get up and take them again the next day- “You haven’t given it a proper chance”, “Maybe if you implemented more lifestyle changes you’d get on with them better”, “After all it’s taken to get diagnosed, you have no excuse now you have the tablets to be normal like everyone else”, “Are you sure you’re eating and sleeping enough?”
Don’t get me wrong, I feel very fortunate to have been heavily supported by my friends and family, and any advice I’ve been given has been given with all of the best intentions of helping me through this process- but when all you want at this moment is a neurotypical brain you want to scream at nobody in particular, I’d like to see you giving this a proper chance, through the physical and mental toll of it all, I’d like to see you eat and sleep, and implement lifestyle changes whilst on a stimulant medication that keeps you awake for days on end and makes the idea of eating physically nauseating.
When it comes to this, the next logical step is having a day or so off, a chance to finally eat and sleep, but not quite! In come the withdrawals, the shakes, the collapsing, the fever…
It will then probably take you a week or so to brave trying it again, purely because the crash of it all has rendered you bedbound, physically done, and mentally blank. If you’re even lucky enough to have got to this point. NHS waiting lists are so long that you will be expected to wait for two and a half to three years (on paper…) before even being diagnosed, and going privately is a small fortune; on top of the initial diagnosis fee, there is then the cost of private medication and every appointment that follows as you try and navigate the administrative nightmare of it all, with ADHD. I found myself lying in appointments, trying again to mask my neurodivergence by making it seem as though managing this had been breezy- until my psychiatrist began to notice the medical appointments I had had to attend due to the innumerable side effects.
Although, enough of the complaining because after all of this, if you reach the light at the end of the tunnel, it isn’t all terrible. You might find something that works for you, or at least isn’t as hellish as the other options, and getting to this stage is a real privilege that I recognise. For me, this breakthrough was Elvanse 60mg, and there were a few months of feeling like I’d cracked the code- until the shortage came. From September 2023 to the current time of writing, December 2023, Elvanse, or lisdexamfetamine, has been out of stock globally. Now access to medication isn’t just limited to whether you can pay the astronomical fees of private prescriptions or are lucky enough to have the prescription through the NHS that I now have- no one can get it, and I find that there is no real viable alternative.
This is the current situation for the thousands of UK citizens reliant upon the medication.
NHS spending on medicines for ADHD has increased by 80% since 2015/2016 which has left pharmaceutical companies overstretched, and users in crisis, with nowhere to turn to keep their lives on track.
It has been revealed that upset patients with nowhere to turn are “anxiously” contacting their pharmacists, and finding life “tremendously difficult”, with 97% of surveyed users “impacted” by the supply issues, and suicidal thoughts in this demographic rising by 62%.
Government interaction in aiding the rising figures of ADHD sufferers has been severely limited. Despite a Parliamentary debate surrounding the ‘Review management of ADHD assessments and increase funding’, having happened in February of this year, this addressed only the gravity of the diagnoses situation, as requiring ‘urgent attention’, and there have been no noticeable statistic changes in NHS diagnoses of the condition since. Before this week, the current shortages had seemingly gone below the Government’s radar, however this week the Shadow Minister for Disabled People addressed the House of Commons, following her written question last month, challenging the lack of Government action on the crisis. This was met by immediate dismissal by the Parliamentary Under-Secretary of State for Mental Health and Women’s Health Strategy, who, without any consideration, shut down this topic as an issue that is expected to be ‘resolved shortly’.
As more and more people suffer, and lives are threatened, there appears to be no expected Government action in aiding the resolve of this crisis, with forecasts suggesting that this should continue to be an issue until April 2024. In this article I second the the Shadow Minister for Disabled People, in asking how the Government has allowed this to happen, and further, why there has been no attempt to manage this shortage with the UK’s leading supplier Takeda. This is an issue that we must all follow, as even if you are not personally affected by the suffering due to this particular shortage, we must all consider how this crisis reflects upon the future of our already suffering National Health Service.