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As a heart transplant patient, I fear no-deal Brexit is truly “do or die”

If I don’t receive my medication on time, my body will start rejecting my heart.

In the winter of 2004, I underwent a heart transplant operation. I was 16 years old. The procedure, carried out at Great Ormond Street Hospital in London, came at the end of a rapid breakdown in my heart’s ability to function – a consequence of cancer in my childhood. It was crap and it was painful, but, ultimately, I survived.

All things considered, circumstance has seen fit to deal me a winning hand. I was lucky enough to be born two decades after surgeon Christiaan Barnard’s groundbreaking performance of the world’s first human-to-human heart transplant in 1967. His genius meant my life could be saved.

I was also been born in Great Britain, a developed nation with the good sense to have established a public National Health Service, staffed by the most dedicated and skilled medical professionals in the world. Its principle of being free at the point of service probably saved me a potential £1m in medical bills.

Since then, my luck has continued to hold. I’ve gone on to live a predictably normal life. College, university, a job. A holiday here, a romance there. That’s pretty much it. If it sounds boring, that’s a good thing. For me, boring means everything’s probably going ok.

Twelve years later, 17.4 million Leave voters decided there simply wasn’t enough stress and anxiety in all our lives.

Years have passed since the Brexit vote, but personally speaking, nothing has changed. As ever, I continue to lack the faintest idea of what practical steps I need to take to ensure I remain healthy over the next 12 months.

A key condition of my current ordinary life is the daily dose of immunosuppressants that all transplant patients must take. In my case, it’s three in the morning, three in the evening, every day for the rest of my life. The objective of this medication is straightforward: to lower my immune system by reducing my overall number of white blood cells, and prevent my body from recognising the donor heart as an unwelcome foreign guest.

Failure to take my medication leads to an increase in white blood cells. Eventually, enough would band together to cause sufficient damage to the heart. That doesn’t sound good because it isn’t. The eventual symptoms of acute rejection are multiple heart attacks and death.

I receive my medication in bi-monthly batches. Having just taken delivery of one, that leaves me with one more prior to 31 October, the date we’re due to leave the European Union.

After that? Honestly, your guess is as good as mine.

I’ve yet to receive a single piece of official information about what measures are taking place regarding my ongoing medication as part of preparations for the UK’s withdrawal process. The current information from the Department of Health and Social Care makes no mention of specific drug types. I’ve spoken to a few of my own doctors and the extent of what they can tell me is that the government is taking action to ensure no shortages of the most popular prescriptions, and that everything should, in theory, carry on as normal.

Therein lies the first problem – the process for getting hold of emergency supplies of these drugs can already be difficult. A decade of experience dealing with local pharmacies has taught me that when deliveries run late, it can be very hard to get short-term replacements. Without the right person signing off, you simply can’t get hold of certain medications in an emergency. While the logic for this is sound, it leaves you at the mercy of your consultants.

Anyone who has ever tried to contact an NHS consultant between Friday and Monday will have some understanding of what a challenge that can potentially be.

When deliveries fail altogether, I’ve found myself turned away by both local GPs and A&E departments in my desperate bid to get hold of replacements. During those instances, I have had to reduce my dose and wait it out. Once I was prescribed cheaper, unsuitable generic tablets in order to make up a prescription shortfall. While these are irregular occurrences, they are existing bumps in a health system that is now facing the added complications of a potential no-deal scenario.

Now my fate lies in the hands of Health and Social Care Secretary Matt Hancock MP, a man whose most famed political achievement is apparently the botched launch of his own app.

I used to find it all bleakly funny, but these days I’m increasingly anxious about the lack of information or guidance on offer.

As a Remain voter, I’m in the curious position of being bound to Brexit. My health now feels dependent on the withdrawal process succeeding as smoothly as possible.

In the absence of any official NHS directions, I’ve caught myself irrationally drawing up increasingly delusional plans about what I need to do in the event of a worst-case scenario. I’ve located the headquarters of drug companies that manufacture my most crucial medication, and used Google Maps to plot desperate tracks across post-Brexit Britain to their sites, in a bid to secure what supplies I can.

I’m serious.

Mycophenolate mofetil (known as MMF for short) is, as chance would have it, manufactured just down the road in Eastbourne. So far, so promising. A quick drive should have me rattling the gates of the correct industrial estate in no time. 

The second, and arguably most important, tablet I’m prescribed – Tacrolimus – is manufactured in Ireland. So, what do I do? Set out for the Holyhead terminal? It would probably be amusing if it wasn’t so utterly desperate.

Perhaps one of the hardest things to face as a transplant patient – and, I think, particularly true of heart recipients – is coming to terms with a certain sense of ghoulishness in yourself. The awareness that you are here because someone else is not. With that fact comes responsibility and, to be honest, it’s not one that I took to easily.

I hear of other patients who trudge up Kilimanjaro or rappel the Grand Canyon, spurred into action by their new lease of life. I’m ashamed to say that’s never been me, or at least it hasn’t been up until now. As 31 October creeps steadily closer and the blister packs begin to empty, my responsibilities become increasingly clear. I can only hope that for the sake of all transplant patients in the UK, the government feels the same way.

When contacted by the New Statesman, a spokesperson for the Department of Health and Social Care said:

“We know how vital immunosuppressant drugs are to many patients and they should feel fully reassured that we are making all necessary plans to help ensure the supply of medicines and medical products remains uninterrupted as we leave the EU on 31 October, whatever the circumstances.

“We are doing everything we can to prepare, including stockpiling medicines where appropriate and we are setting up an express freight service to bring medicines and medical products into the country within 24 hours, if necessary, as part of our contingency planning.”

> This piece is from our Know Your No Deal series on the different ways a no-deal Brexit will impact the UK