. “Some dialysis patients use hospital transport, but if they are able to drive themselves in, they have the right to have their fuel costs reimbursed. But just as with the energy reimbursement, we are finding it is patchy and many people aren’t getting the reimbursement for that and some are only being reimbursed at a rate of 12p per mile.”
“We strongly believe kidney patients should get extra support to help with the heating in their homes, because if the heating is off and the room is too cold, the machines won’t work,” says Ms Loud. The charity is calling for urgent action to address the specific needs of people with kidney disease who are facing impossible choices ofMr Quin, 44, who lives near Workington, Cumbria, was diagnosed with polycystic kidney disease just before his 30th birthday. The inherited condition causes clusters of cysts to develop in the kidneys, causing them to enlarge and lose function over time.
Andy says now he is on universal credit, financially, life is very difficult. He says he gets around £42 from the hospital trust to cover the electrical costs of running the machine which he is grateful for because it means he can do dialysis at home – but he says it is a drop in the ocean compared to the actual extra costs kidney patients are facing.
“What frightens me most is that there are people in their homes, sitting in the cold and dark doing dialysis to stay alive with blankets on them because they’re too worried about how they’re going to pay their energy bills to put the heating on. “Dialysis is so important for me and for thousands of other kidney patients as they need it to stay alive. The Government should be supporting us and helping us have a quality of life.