Diagnosed with motor neurone disease shortly after moving to France from the UK, Rob Johnson’s round-the-clock care is funded entirely by the French government. Mandy, his wife, worries that a ‘no deal’ Brexit could be costly for the family and impractical if they have to move back to the UK. Chris James from the Motor Neurone Disease Association shares their story.
In Europe, healthcare provision for patients with motor neurone disease (MND) is very different than in the UK. Rob Johnson was diagnosed with MND in 2008, after he and his wife Mandy moved from Warwickshire to France in 2004 with their three children. They had their own business and paid taxes in France longer than they did in the UK. In 2011, Rob was rushed to hospital and has been on a ventilator and percutaneous endoscopic gastrostomy (PEG) feed since.
Mandy explains that the system in France is different in that patients are not means tested for expenses such as home adaptations. For example, when the family wanted to renovate their extension to make it accessible for Rob, they were offered the amount that would cover the basics – if they decided to make the extension more luxurious, they would pay the additional costs themselves.
According to Mandy, the health needs of Rob’s condition are covered 100 per cent by the French government. He has fortnightly visits from his GP at his home, so that he doesn’t go through the stress of unnecessary travel. Mandy is also supported by nurses who come in for an hour every morning and for half an hour in the evening, and is entitled to respite support.
The British family’s high praise for the European system begs the question: does a similar strategy need to be adopted in the UK?
Rob now only has movement in his eyes, meaning that he communicates using a whiteboard with letters written on it. He requires round-the-clock care and Mandy is his primary carer, a role she is devoted to. She sleeps on the sofa next to his hospital-type bed each night, listening to his ventilation device to ensure all is working as it should be. She champions Rob, ensures he is comfortable when others are treating him, and is his communicator with the rest of the world.
Mandy is entitled to respite support but the challenge is getting qualified nursing support to cover and someone who can speak English. Rob finds it easier to communicate in English on the whiteboard.
With the UK facing an ageing-population crisis, coupled with the expensive and rapid progression of motor neurone disease and constrained resources, the problem does not seem to be disappearing anytime soon.
The couple lives in Normandy and Mandy describes the healthcare in France as ‘amazing’ and says they have everything they need without having to stamp their feet.
Commenting on what a case of a ‘no deal’ would mean to them, Mandy says: “It would be too costly and impractical to move back to the UK. We haven’t applied for French citizenship as it’s just not a priority for us at the moment. Who knows what could happen with Brexit though, nobody knows.”
Chris James is director of external affairs at the MND Association. Follow him and the organisation on Twitter @ChrisJamesMND @mndassoc
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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