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A woman with a distressed expression holds a phone to her ear and holds a UK prescription form. The London skyline is featured in a window behind her.

Why My Body Already Hates Brexit

It’s a normal weekday, I’m at work and I’m struggling. Every movement I make is slow, my limbs ache and I feel like crying. But there are meetings to attend and emails to shakily bash out a reply to. And these things don’t stop for Parkinson’s. Or the fact I’ve been pretty much un-medicated since 7:30 this morning.

And no, it is not because I forgot or got confused about whether I had taken them. I just don’t have any to take. And this isn’t the first time. Every month without fail I struggle through a day like this. Desperate for the little package to arrive that unlocks my body and makes me function again.

Using an app to manage my prescription

Around a year ago I started using an app, which manages my repeat prescription, orders my medication (Sinemet, Amantadine, and Neupro patches), and posts them to me. And until recently that’s worked really well with my busy daily life and inability to get to a chemist (pharmacist) during opening hours. But I’ve noticed over the last few months they’ve been slipping, and I haven’t been getting my medication on time.

Medication management & the UK government

The NHS guidance around Brexit aims to nip panic around medication in the bud. It suggests that there is no need for individuals to stockpile. But when it comes to ordering this seems to have become more of a rule than a suggestion. I discovered this recently when trying to order a double amount of medication to take with me on a trip to Japan, a cautionary measure I’ve always been advised to follow by my medical team when traveling abroad. It was declined by my doctor on the grounds of stockpiling. I had to make do with what I had, keep a hawks eye on my baggage and pray for no ash clouds.

I’ve never been great at math. But if I cannot order my repeat medication until a week before I run out and that medication more often than not is out of stock with suppliers taking 7-10 days to come back in, plus postage time to me, I know that that leaves me in the negative. I’m then left to rally round, beg doctors to write me a prescription to bridge the gap, call round countless pharmacies until I find one with a different stockist, and then sweet-talk hesitant pharmacists into ordering these expensive drugs speculatively for a random girl who is pleading with them on the phone.

Medications affected by Brexit

Recently e-surgery released a list of medications that would be affected by a No Deal Brexit. Some would have reduced, others would have sky high costs. Three Parkinson’s medications were on that list: Co-Careldopa, Ropinirole, and Rasagiline and countless others for major and long-term health and mental health conditions. It spread panic within health communities. Suddenly it started to dawn on people that they might not be able to access the drugs they need to keep them functioning and, in some cases, alive. In September the #deathbybrexit hashtag swept across Twitter with worried patients up in arms about how a No Deal Brexit would affect their conditions and lives.

Historically, the UK pharmaceutical market has always been a fragile one. Blessed with some of the cheapest medicines in the market, this becomes a curse when there are worldwide shortages. The UK suddenly isn’t an attractive place to put stock in if the manufacturers and distributors can make more money elsewhere. Add Brexit to this already fragile system and things start to get really messy.

So what can we do?

According to Parkinson’s UK in a recent article on the subject, we should report any shortages but essentially carry on as normal. I guess that means I should probably start getting better at sweet-talking pharmacists!

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The ParkinsonsDisease.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • Busybee
    4 hours ago

    please pm me. im in canada. no brand meds available but i have a months worth of carbdopa i could send you! i no longer need it since having DBS surgery
    we have to help each other around the world!

  • ShelbyComito moderator
    1 hour ago

    Hi @busybee, we appreciate you commenting and being so helpful to others here! Please keep in mind that it’s important for one to discuss their treatment options with their doctor before trying anything new, as people can have such differing responses to the same treatment. Thanks for your understanding and for supporting others here! – Shelby, ParkinsonsDisease.net Team Member

  • Dan Glass moderator
    2 days ago

    I wish you well on this vote. I spent Dec27, 1990, – July8, 1996, in England (Bury St. Edmunds was the final part after Lakenheath and Bentwaters). Hopefully, Britain can influence American voters with a positive solution. We could both use some sanity in office.

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