‘Something has got to give’

Vincenzo’s mother, Maria, said: “Our energy cost £1,500 last year, now it is estimated to be £5,000. Many families are in the same position as us. Something has got to give – this is life-saving equipment, so it should be funded by the NHS.”

While the cost of oxygen is reimbursed through providers such as Air Liquide, there is no such payment system for home-ventilated patients who may or may not be receiving oxygen. 

In France, ventilators are supplied and managed by a home care provider, with utility bills reimbursed.

James Taylor, from the disability charity Scope, said: “These disabled families are going to be plunged into debt and it’s going to have a devastating effect on their lives. We are already seeing about two million disabled people in fuel poverty and we are worried that is going to go up and up. Government help is needed now.”

Disabled people can ask their energy company for special dispensation and apply for the warm homes discount and one-off grants, but Mr Taylor said: “None of these programmes are well publicised, and even with their help it’s barely going to scratch the surface.”