We’re rationing our ADHD medication due to shortages — this is the impact
'As someone with ADHD, sorting all of this out myself has been a nightmare.'
Having received his medication by post for several years, Jamie Johnston’s monthly deliveries stopped without warning five weeks ago.
The 33-year-old, who runs neurodivergent-friendly dating app Mattr, had seen rumblings on social media about a shortage of ADHD medication, so went to his local pharmacy in Hackney to work out what was going on.
Not only was he unable to get his Elvanse prescription filed in person, Jamie was then sent a fine letter claiming he had an incorrect prepayment certificate, before being offered worrying guidance from his GP that put his health at risk.
‘I was advised by the doctor to add my remaining pills to a glass of water and sip periodically to eke out the dosage,’ he told Metro.co.uk.
‘This led to a dangerous situation a couple of weeks ago where, half asleep, I drank the water by my bedside in the night, forgetting it had my medication in it.’
Jamie was ‘stunned’ over the ‘lack of communication’ he experienced and the controversial advice he was given, particularly since he could see a spike in blood pressure through this form of rationing.
‘They have no idea what’s going on,’ he added. ‘I keep being told to ask the GP for an alternative medication, but even this is unresponsive as I think they are also running out now too.’
Methylphenidate (licensed under the brand names Equasym, Xaggitin, Concerta, and Xenidate), lisdexamfetamine (Elvanse), atomoxetine (Strattera), and guanfacine (Intuniv) are in short supply due to ‘manufacturing issues and an increased global demand,’ according to an NHS advisory.
Prescribers have also been advised not to start new patients on medications affected by the shortages until supply issues have been resolved, which may not be until December or later.
After being diagnosed with combined type ADHD in 2020, the 60mg Elvanse capsule I take every working day has been a lifeline. Years of struggling to prioritise, making silly mistakes and my brain (and mouth) going a mile a minute gave way to a more comfortable pace; I’m not perfect by any means, but I no longer break down at my desk or act before thinking in the way I did before.
As a result of the shortage, I’ve spent hours calling round pharmacies in the hope they’ve got stock available and jumped through hoops to have a minor prescription change (three 20mg pills daily compared to one 60mg) approved by my doctor.
My pharmacist has been a huge help, but there’s a sense of irony in a group defined by poor organisational skills and forgetfulness having to keep on top of such a large amount of life admin.
Joanna Nadin, a novelist and university professor from Bath, has been doing her best to help her daughter Millie Edwards, 20, get the help she needs.
Millie, who was diagnosed with ADHD at 17 and takes 40mg Elvanse daily, is studying at the London College of Fashion, but can’t register for a GP in Mile End where she lives without jeopardising her place on the waiting list for support.
Joanna says her daughter ‘phoned in a panic after Boots told her they couldn’t get her meds indefinitely because of a national shortage. This was a month after the National Patient Safety Alert went out’.
Although this alert recommends GPs contact patients who may be affected, Millie received no such communication. She demanded advice and eventually received a response, but was left in ‘immense amounts of stress’ over the inadequate solutions proposed.
Millie told Metro.co.uk: ‘They told me to take one-to-two-day medication breaks where possible (which isn’t an option for me as I’m in the middle of university coursework submission), to see if there’s a lower dose available (there isn’t) or to switch to a new medication entirely (there is currently none available).’
The pair called dozens of pharmacies in London and Bath and found one of the few remaining bottles in stock, but this runs out in three weeks, meaning they may have to go through the same exhausting process all over again.
‘For someone with ADHD and a job or university, this is an almost impossible task even on meds,’ said Joanna. ‘Imagine trying to do this when they’ve run out.’
Amid the confusion of the last few weeks, the mum has heard of others relying on caffeine tablets to get by, buying dexamfetamine on the black market, or using old stock from friends who’ve changed medication and trying to titrate it themselves.
Tabby Farrar, 32, was diagnosed with combined type ADHD in 2022 and is seeing similar stories play out an Employee Resource Group she runs at work for other neurodivergent people.
She told Metro.co.uk: ‘Colleagues right now are telling me they are waiting to start titration months after diagnosis because there are no meds to trial them on, one person who has completed titration and been confirmed for a prescription can’t now get it issued and is having to go cold turkey and deal with withdrawal symptoms (depression being a key one) and another on the same medication as I am has admitted to only taking her medication on work days because she’s trying to make the packs last longer – leading to emotional turbulence and nausea every weekend.’
Getting hold of her own Elvanse prescription has been fraught with complications since September, but this month Tabby had the script returned by the pharmacist, who told her not to expect anything until the New Year.
In the interim, the content and digital PR consultant and wellbeing blogger has spent a considerable amount on an ADHD coach to help her manage symptoms. She is hoping the Access to Work grant she applied for months ago will cover the cost, yet warns that long wait times may prevent this being an option for others and laments the lack of assistance available.
‘I’ve had my medication stopped unexpectedly with no alternative support put in place via the NHS and no signposting to alternative services offered,’ said Tabby.
‘After getting diagnosed late in life and finding prescribed treatment totally life-changing, it’s pretty miserable being sent back to square one. Like a “that was what you could have had… but now it’s back to the preventable struggling instead”.’
An absence of guidance and support from the NHS has been an ongoing issue in the ADHD community, something brought into sharp focus by the current situation.
Henry Shelford, the CEO and a co-founder of ADHD UK, said: ‘ADHD is a disability and the sudden removal of medication is akin to removing a wheelchair from a disabled person that needs it. The NHS should have realised that this was happening and had a plan in place.
‘Instead, people are only finding out when their pharmacy can’t supply. They’ve been left stranded with no support. It is an abject failure, but sadly this lack of care is something we’ve come to expect with our stigmatised condition.’
Recent coverage around ADHD suggesting it’s overdiagnosed (despite evidence proving the opposite), ‘fashionable’, or merely an ‘illness identity’ has impacted the public’s perception, but the are numerous personal and societal ramifications that come with dismissing what people with the disorder go through.
Adults with ADHD are five times more likely to try to take their own life than those without, while the World Journal of Biological Psychiatry found that young people with undiagnosed or untreated ADHD are more likely to end up in prison.
When you’ve been shamed as ‘odd’, ‘lazy’, ‘loud’, or ‘scatty’ your whole life, spent years waiting for a diagnosis, then been told the only treatment offered via the NHS is no longer accessible, is it any wonder you’d feel let down?
What to do if you're affected by the shortage
Dr Hana Patel, NHS GP and GP Medico-Legal expert witness told Metro.co.uk she has patients call her daily to discuss issues around ADHD, something ‘causing a lot of stress, worsening of mental health problems and needing consultations with their GP.’
She said: ‘I would advise people to please not share their medication with anyone else.
‘If a patient’s mental health needs are very complex, for example they also have mental health problems, or their ADHD symptoms causes them severe difficulty, they can discuss this with their GP, who may recommend a specialist consultant review. ’
According to Dr Hana, NICE guidelines recommend having regular treatment breaks from ADHD medications, so this could be a solution to preserve the amount you have left.
‘It is not unusual to stop taking medication over the weekend or during school holidays,’ she adds. ‘Therefore, no harm should come from stopping the medication, but this should be done in a planned way.’
In addition to this, she says the general tips given by the NHS on managing symptoms may be of use.
These include planning your day, setting clear boundaries, being aware of upcoming social situation, and carrying out regular exercise.
The moderation team for the ADHDUK Reddit page, where people seek advice from peers and share their experiences, say they’ve seen a wide range of knock-on effects among members.
A statement from them provided to Metro.co.uk read: ‘People often say in our community that due to the shortages, they feel as though they’re “losing who they are” and that they’re “scared to go back to how things were”.
‘It is heartbreaking, and we have seen a shocking increase in the number of posts talking about or mentioning suicide as a result. What we’re seeing is a situation where many people who were doing “okay” before the shortages are now being pushed to unexpected and catastrophic breaking points.’
They believe the language used by agencies claiming the stock issues are down to ‘increased global demand’ blames people with ADHD, an attitude which ‘directly filters down into people’s GPs and mental health teams, impacting the care our community receives as a result.’
Alongside negative perceptions surrounding ADHD, the mod team have spoken to members who were misinformed over the safety of tapering medications like guanfacine, which, when halted abruptly can trigger rebound hypertension or even result in death.
Others have resorted to ‘predatory services that take advantage of people’s desperation’, forking out large sums for limited or incorrect advice.
That’s why it’s so important not just to keep fighting for the treatment you deserve but to lean on the support of fellow ADHDers dealing with the same thing. As well as sense-checking the validity of information, these communities can show you you’re not alone in your frustration.
‘We will get through this,’ added Millie, who says the situation has been a ‘nightmare’. ‘Just stay strong.’
What does the NHS and Department of Health say?
In a statement given to Metro.co.uk addressing the ADHD medication shortage, a Department of Health and Social Care spokesperson said: ‘We understand medicine shortages can be distressing but we want to reassure patients we are working intensively with manufacturers to increase supply for the UK and ensure continuous access to ADHD medicines for those who need them.
‘Some of these supply issues have now been resolved, but we know issues remain with others. These are expected to be resolved by the end of the year.
‘We have issued communications to the NHS to advise healthcare professionals on how to minimise disruption for patients and keep them informed amid these supply issues. Patients are advised to speak to their clinician regarding any concerns as they are best placed to discuss how they might be affected and the suitability of treatment with alternative medicines.’
Metro has also contacted NHS England and will update this article if we receive a response.
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