More people in the UK are struggling to access vital medicines than ever before, exacerbating conditions from epilepsy to the menopause.
Here, four people share how the shortages have affected their health and wellbeing.
Phil Betts, 44, an insurance firm employee from Norwich, has experienced shortages of epilepsy medication
I have a nocturnal, sleep-related form of epilepsy, which is caused by tiredness. I have night fits or seizures within an hour of waking up. It usually takes about half an hour to come round after, and it makes me feel tired for the whole day.
It’s pretty well controlled, sometimes I can go three to four months without anything, but I’ve found if I do have a fit I’m likely to get another one quite quickly after, so you’re almost building up immunity. That’s why consistent medication is really important to keep it stable. I take 13 pills three times a day.
Clobazam – that’s where I’ve had the problem with shortages, because my usual brand is Frisium. In November, and also for my most recent delivery, a different brand was sent. Back in November, I had two seizures in two nights – last week I had the same problem.
I contacted my hospital consultant who said it’s not a great idea to be swapping around different manufacturers, it’s how they put the pills together, it’s not always the same. That could have an effect on how it’s released into your body.
For another medication, Epilim (sodium valproate), there’s been a delay quite a few times, it’s been out of stock with online Pharmacy2U. I phoned Boots originally and they had none, so I tried two to three local ones and again no joy. Luckily, I managed to get some in the end, but I’ve still got some pills owed to me.
Getting worried about whether the medication is going to turn up on time and tracking it, not only is that using up my time but it’s pretty stressful with a condition which can cause a lot of trouble. The stress itself can trigger a fit. When you go to sleep you think, “Oh no, what’s going to happen tonight?”
It’s not the first time I’ve encountered shortages, but it’s probably the worst. Since about November I’ve had to keep chasing where the medication is at. I can’t think of a previous occasion where I’ve totally run out. I’m not particularly looking forward to the next time when I need to get some more in. If it means I have to travel around different pharmacies I’ll have to do it. That’s the other problem – I don’t drive because of my epilepsy so I’m having to ask people to give me lifts around.
Grace Young, 19, from Devizes, in Wiltshire has to travel more than three hours to get her ADHD medication
The medication shortage has turned my life upside down. With my medication – Elvanse (Lisdexamfetamine) – I’m amazing. I can get everything done and more. I’m great at work, I can reliably make myself meals and look after myself and my wellbeing.
My medication allows me to think straight. I can focus on one thing at a time instead of 10 at once and getting nothing done. Without my medication, I have all of this taken off me. It’s made me realise that being able to function normally with medication is a luxury, and it shouldn’t be like that.
I rely on my medication so much, I’ve been on various medications since my diagnosis at 14. Without it I feel 14 again. I’ve got no sense of self-management. Medication has been next to none. Because I’m not with the adult ADHD service my GP can’t prescribe me anything else at all.
I’ve tried a variety of vitamins but nothing comes close to the mental clarity and change of mindset ADHD medication can give you. The closest places that stock my medication are more than three hours away. I’ve tried getting it delivered but it’s out of stock when I try. No luck at all. It’s been the same for months.
Naomi Cooper, 43, an HIV and sexual health worker from Gloucestershire, is experiencing unpleasant side-effects from alternatives to her usual form of HRT
Over the past four years, there have been very few times where my HRT prescription has actually been in stock – at the moment it’s been out of stock for about five months.
I’m prescribed an oestrogen patch and my progesterone is prescribed separately. That was also out of stock for a number of months last year.
If your progesterone is out of stock, you can’t take the oestrogen because that’s what protects your womb. If your oestrogen is out of stock that’s when you’ll get the side-effects of menopause – hot flushes, not being able to sleep, your bones literally ache. If I don’t have the right oestrogen I feel 20 years older, your brain doesn’t function correctly, your thought processes aren’t particularly smooth, you forget words, appointments, sometimes your own name.
I was offered a spray, but that caused migraines, which were debilitating. I was offered a different brand of patch and my skin reacted so it caused burning and red welts on my skin.
The patch I use trickles in and out of stock at the moment – I got stock about two months ago after waiting for 2.5 months, but I’m coming to the end so I’ll be back to square one. I have to start again with what products do I replace and what side-effects do I put up with. Going through menopause younger the risk of heart disease is higher, and of low bone density and damage to the brain.
It’s the worst I’ve known it; they release dates where they say stock will be sent out but those dates come and go and there’s no stock available. There’s now women on pharmacy waiting lists, so even if the stock comes in that will immediately go out. It’s really frustrating, you spend quite a lot of time online checking the pharmacies’ stock, nipping in to see if you’ve timed it right with a delivery.
Rose Langlands, 29, from Maidstone, Kent, is finding that shortages of antipsychotics are increasing her anxiety
I have borderline personality disorder and bipolar, which means that I can go from being extremely manic to suicidal, there’s no in between. Medication helps keep me level.
I had problems accessing quetiapine, an antipsychotic, and duloxetine, an antidepressant. It happened about a year or two ago, but it was bad to the point where I’ve changed pharmacy about three times. They had to change my brand of duloxetine because my original dose wasn’t available, so they have had to split it in two.
I’m not on quetiapine any more because of the shortages – I was switched to aripiprazole after six months. Luckily, that works well for me and I haven’t had any problems with it, but I’m always anxious going into the pharmacy and them saying: “Sorry we haven’t got any of your drugs in stock.”
There were definitely a lot of consequences for me not having my medication for a few months. A lot of people were concerned about my manic episodes because I can be very much out of control, spending a ridiculous amount, getting myself further into debt, not being able to function properly. The same with my anxiety, I stayed indoors, didn’t want to go out.
I’ve been taking medication for about nine years now and I never had to worry about it, all of a sudden there were shortages. When you have the mental health team saying you need to be taking your medication regularly, and then you have the shortages it’s a bit like, what can I do?