My son was diagnosed with leukaemia on holiday in Italy. Because we're still in the EU, his life was saved

Madeleine Burbidge

My six-year-old son is trapped in his room. It’s been 18 days now. He begs me to let him out. But it is too dangerous for him to even step into the corridor.

My son has acute lymphoblastic leukaemia. He is in semi-isolation because his white blood cell count is so low that he is at extreme risk of infection. We are not at home in London. We’re in a paediatric haematology hospital in Italy. He was diagnosed here almost four weeks ago, soon after we’d arrived for a holiday.

My husband and I have much be grateful for despite this devastating situation. Our gratitude extends far and wide: the paediatric doctor working in a remote and mountainous region who did some rapid blood tests; the transfer without delay to a world-class hospital where my son’s diagnosis was confirmed; and the right of my son to receive immediate and expert health care through the European Health Insurance Card (EHIC).

It is currently the right of every UK resident, my son included, to receive emergency or medically necessary state-provided healthcare, when travelling in the EU. It extends to all EU citizens travelling from where they live. The cost is paid back by your state healthcare provider in your country of residence, in my son’s case, the NHS.

Before someone complains about wasting NHS money in Italy, let me say this. If our GP had run some blood tests when my son had an instant-access appointment because of fever and stomach pains less than two weeks before his diagnosis in Italy, he would be now confined to a room in the paediatric haematology unit at Great Ormond Street.

I’ve never before detoured to a hospital while in the EU. I’ve taken this profound right that the EHIC gives me for granted. Until now. And it disturbs me that its future is in jeopardy.

Theresa May’s government has said that it wants to retain the EHIC, but with the current shambles, there’s no guarantee. Will the EHIC become just another right that Brexit bulldozes away?

My experience of the health system in Italy so far has impressed me – it is excellent. Let me give you an example. Just after we’d arrived at this hospital, my son began to feel excruciating pain in his lower right leg. Deadly infection can be a by-product of leukaemia. Within a very short period time, he’d had ultrasounds, an MRI, visits to his room by the head of infectious diseases and the head of surgery. He could have lost his leg had they not acted so decisively. The lead consultants here are also in regular contact with their equivalents at Great Ormond Street on my son’s behalf and they’ve put him on the UK protocol treatment plan (which is two years long) to ease our return back home to London once his white blood cell count is out of the danger zone.

My son’s care in Italy is in stark contrast to the recent experience of an Italian teenager while on an English course in the UK in July. She went to A&E three times between 17 and 20 July complaining of severe headaches and vomiting. Prescribed painkillers, she was told that she was “as healthy as a fish”. On 22 July, back in Italy, after a CT scan, the teenager was diagnosed with a cerebral brain haemorrhage. Maybe that’s just one example, but a huge study published in May 2017 by The Lancet revealed that the UK has the 30thbest healthcare in the world. Italy is way ahead in 12th place.

People may say, who cares if the EHIC is lost as a result of Brexit? Just buy travel insurance! If only it were that simple for people with pre-existing conditions such as dialysis patients.

The EHIC never replaced travel insurance. It doesn’t cover you for cancellation, lost phones, rescue from mountain slopes, or air ambulances. What the EHIC has done is make travel insurance cheaper. According to a report by the House of Lords, travel insurance costs will rise exponentially among older people if the EHIC ends.

And then there’s the issue of getting your travel insurance to pay. When I was in the US in 2011, I needed two stitches for a cut on my thumb. It took nine months of calls and stress, which finally, in desperation, I ended with a sit-in in reception at one of my insurer’s offices (I was over seven months pregnant at the time) before they paid the $3,000 bill. With the EHIC, that potential stress is removed. And as I am often overwhelmed by sadness and exhaustion, as all parents are who have a seriously ill child, I’m so relieved that I have one less thing to think about.

But the EHIC is more than just a question of access, money or convenience. It is one of many nuances of European citizenship that were forgotten in the Brexit campaign. The EHIC symbolises how continental Europe shares the UK’s core value: that everyone has a right to decent healthcare. And we should not forget at this precipitous moment that this value is hardly universal.