"As if Brexit worries were not enough, Covid-19 has reshaped the world that we knew. There was a radio item today about the lack of touching and closeness within families, something I greatly missed when initially shielding within the house until my son stopped attending school and my husband work and I continue to miss it with wider family. I’m on home dialysis so I’m saved the worry of contracting Covid-19 during hospital sessions; but it also means that I don’t have the ability to chat to others in the same situation. Back in March, having just come through a period of health uncertainty, I was looking forward to the summer, to relaxing in the August sunshine abroad, without having to tense against the cold which I often do. I suffer from anaemia and am unable to take a normal dose of EPO due to three primary cancers in three years, sometimes hovering on the margins of severe anaemia.
Holidays pre-brexit
I’ve spent previous summers with friends and family in Poland. We relax by the lakes or on the brilliant white sands of of the Baltic Sea resorts; visit family in Warsaw and then spend time in Krakow, often with an excursion to the Tatra mountains for a weekend between dialysis days. The holiday co-ordinator at Diaverum in Poland liaises between my clinic and the hospitals in where I dialyse. Not having to worry about setting up, cleaning my machine or sorting out alarms is a wonderful release which also gives me more free days between the three sessions of dialysis a week, as oppose to five at home. It’s a pleasure to meet familiar staff and their everlasting wonder at how I insert my own needles using the buttonhole technique.
My consultant often asks if I’m going away for a week or two and laughs when I say I’m going for three or four weeks with my son and my husband who joins us for the second half. Yes it was stressful going the first time: not quite knowing what to expect… but I’ve also holidayed in Crete and the Mesogeois team are wonderful, recommending nearby hotels and arranging travel to the centre.
End of freedom?
My friends tell me I’m a natural optimist and I have great hope that our scientists will find a solution to Covid but what I cannot understand is that the supposed “freedoms” of Brexit will stop me travelling abroad ever again. The European Health Insurance Card (EHIC) means that we have been able to arrange reciprocal dialysis in European countries at no cost to us. The dialysis was still charged for but the centre was reimbursed by the scheme for non-residents. From 1 January 2021, as things stand, there will no longer be an EHIC for British citizens nor a replacement scheme.
The government issued a positioning paper in 2017 on the subject: “During negotiations, the UK will seek to protect the healthcare arrangements currently set out in EU Regulations and domestic UK law for UK nationals and EU citizens who benefit from these arrangements before the specified date. We will also seek to protect the right of UK nationals and EU citizens to obtain and benefit from the European Health Insurance Card scheme.” Unfortunately, despite the negotiations being at a critically late stage, there has been no further statement.
Are all 29,000 kidney patients in the UK to be totally forgotten?
Trapped in the UK
To add insult to injury, the government recently published advice for travellers to Europe from January, advising us to buy appropriate travel insurance. Yet to my knowledge, insurance doesn’t cover dialysis or any treatments for pre-existing conditions. Presumably the price will also increase. Annual travel insurance already costs me between £300 and £500. Are all 29,000 kidney patients in the UK to be totally forgotten?
On my travels I met one gentleman, on dialysis for 10 years, who’d had enough and was ready to finish treatment for ever. On the advice of his consultant he’d come to Crete with his wife, able to relax in sunshine and the excellent care at the dialysis clinic. He told me it was the difference between life and death. I fully understood him and have always relished the freedom of being far away from home dialysis. Holidays give me a huge boost of new energy and self confidence. Being on dialysis makes me feel vulnerable and it’s often hard to have the confidence to believe you belong to and are valued by society.
Who is going to help us?
Over the last three years I have emailed No.10 twice to highlight this issue, receiving a response once, that ‘the relevant department would be in touch’. To no avail. My MP hasn’t been any better, responding to other issues I have raised but strangely never this one. Finally I’ve sent a handwritten letter to the Prime Minister and to the Secretary of State for Health and Social Care asking them how can they leave dialysis patients stranded in the UK whilst they continue to holiday wherever they please? Again, I’m waiting for a response….
As it stands, paying for dialysis costs abroad will be impossible for all but the wealthiest. I am claiming my pension early on ill-health grounds though I by no means feel like a pensioner. I already holiday with friends and family because the cost of hotel accommodation is mostly beyond our means. Where would I find an extra £1000 a week to pay for dialysis? It turns out, Brexit is a greater worry for me.
It’s very reassuring that Kidney Care UK and the Brexit Healthcare Alliance have been lobbying the government on this issue since 2016. Having worked in government communications for 27 years, often with charities and lobby organisations on the development and publicity of policy, I know how important their views are in the decision-making process. I just hope that the government are in listening mode."
