Stephen’s partner Amanda has been on dialysis for 28 years. With a zest for life, the ability to jet away on holiday has helped to lessen the feeling of being ‘trapped’ by the treatment. This has been possible using the European Health Insurance Card (EHIC), which enables Amanda to dialyse while abroad. Losing this as a result of Brexit would be heartbreaking and psychologically detrimental, says Stephen.
Amanda has been on dialysis for the entire time I've known her. When we met in 1995 – she was dialysing at St James Leeds on the night shift and our first Christmas Eve together was spent on the ward!
Since then, I've seen her cope with three transplants (she had the first one before I knew her) and 14 years of home dialysis, so I've experienced all aspects of the transplantation and dialysis with her.
One of the biggest problems for Amanda has been a feeling of being 'trapped' by dialysis. She has a terrific attitude to life, always wanting new experiences, to travel and see things, and dialysis has at times left her feeling tethered.
The ability to have holidays is so incredibly precious to us both, as this is the time we make incredible memories together – climbing on a glacier in Norway, wild beaches in southern Ireland, the northern lights in Iceland, whale watching in Tenerife – and it gives her the sense of freedom she so often feels is lost to her.
As a carer, I too get the benefit of respite. I work full time in a high-pressure job and although we make the best of evening dialysis sessions, it's still tiring and the holidays allow me some time to recharge my batteries.
The thought of potentially losing the ability to travel abroad for dialysis using EHIC is heartbreaking and unfair. And coupled with the difficulty of arranging treatment away from base in the UK, it would exacerbate enormously Amanda's feeling of being trapped by her illness.
From a psychological viewpoint, it would be highly detrimental, and given that she has decided to take control of her treatment, and so saving the NHS money and effectively freeing up a space in a unit, it would feel like a kick in the teeth to then be denied the right to dialyse overseas.
This is the sort of issue which the simplistic Brexit debate completely overlooked: 29,000 patients, many with families who go through kidney disease with them, facing the possibility of having a basic right denied them.
So much of the debate concerned the rights of free movement and, ironically, what those wishing to deny EU citizens wanting to travel to the UK have unwittingly achieved is to risk the rights of all but the wealthiest 29,000 UK dialysis patients from travelling anywhere in the world.
It’s such a hard life for dialysis patients and their families. Amanda has survived for 28 years on dialysis through taking control of her treatment, engaging with her clinicians and learning how best to cope.
And to go through all that and then find that a major supporting factor, the right to a holiday, to respite, is taken away, is simply terrible.
Stephen Dodwell, Amanda’s partner. Kidney Care UK www.kidneycareuk.org
Find out more
The Brexit Health Alliance
has warned that patients could suffer if a 'worst case scenario' Brexit ended healthcare arrangements between the UK and EU. The alliance is calling on Brexit negotiators on both sides to take steps to ensure this does not happen.
Discover more in the Brexit Health Alliance's new briefing Maintaining reciprocal healthcare for patients after Brexit
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