‘Without dialysis I’m dead’: fear for the lives of kidney patients who can’t afford heating

Andy Quinn sits at home in front of his dialysis machine and knows that the electricity needed to run it is really a matter of life and death.

“If I don’t have dialysis for a couple of weeks, I’m gone, I’m dead, that’s the harsh reality,” he says. I. “But kidney patients who do dialysis at home pay not only for the machine, but also for heating and lighting in the room, as they do this for hours several times a week.”

Andy, 44, is one of around 30,000 kidney patients in the UK who depend on dialysis machines to survive, but many face poverty and struggle to pay skyrocketing energy and food bills during a cost-of-living crisis.

tell activists I that life support machines don’t work when it’s too cold at home, and they say they’re hearing from desperate patients worried about the rising cost of living.

Kidney Care UK, which supports people with kidney disease, is calling on the government to do more to support patients with kidney disease and provide more financial support.

“Dialysis is a life-sustaining treatment that patients undergo for several hours at least three times a week, both in the hospital and at home,” said Fiona Laud, policy director at Kidney Care UK. I.

“They have to keep taking this therapy because it keeps them alive and they have no choice.

“Another option for kidney patients is a transplant, but people don’t always know that not everyone is healthy enough to get a transplant and there is a waiting list.

“There are about 30,000 patients on dialysis, but only about 5,000 of them are on the transplant waiting list. This is not an option for everyone, and there may be health factors that make the surgery itself risky.

“Many people waiting for a transplant are on dialysis and need this treatment to stay alive because their kidneys are failing and there is no cure.”

Mrs Loud says I that, unfortunately, thousands of kidney patients are being plunged into a cost-of-living crisis that puts their physical and mental health at risk.

“When you have kidney failure, you are already cold because your kidneys are not working, and this condition makes you more susceptible to colds,” she says. “Therefore, it is important that their homes are warm.

“Then they have to undergo dialysis, which is life-sustaining and uses electricity. Another concern is that patients with kidney failure are likely to be on a very specific and restricted diet, which can lead to additional costs, especially when food prices have risen so much.”

Dialysis is a procedure for removing waste products and excess fluid from the blood when the kidneys are not working properly. Patients whose kidneys begin to fail need to be put on a dialysis machine several times a week for several hours at home or in the hospital.

Treatment consumes a lot of energy, and rising bills have made it even more expensive. Although those treated at home are expected to be reimbursed by the National Health Service for dialysis machines and those traveling to the hospital should be reimbursed for mileage if they go there, Ms Laud says each hospital has its own his own policy, and while he has struggled to ensure that all chronic kidney disease patients get what they are entitled to, she admits that it is still “mixed”.

“Patients should be reimbursed for the energy they use for their home dialysis,” she says, noting that people should be reimbursed for all electricity and water costs associated with using their dialysis machines.

“We realized that while patients in England were eligible for this reimbursement, some trusts implemented it and many did not.

“We have worked very hard to ensure that everyone gets the compensation they are entitled to. But each trust has its own policy, and there are many differences, and it took a long time to develop this policy.

“There is a big disparity in how much people are reimbursed and how quickly they are paid, and that is causing a lot of anxiety for patients.”

Ms Laud says that those who go to the hospital several times a week are suffering from rising fuel prices. “Some dialysis patients use hospital transportation, but if they can drive, they are eligible for fuel reimbursement. However, as with the energy flat rate, we find that it is patchy: many people are not reimbursed for it, and some are only reimbursed at the 12p per mile rate.

One of Kidney Care UK’s main concerns is the fact that financially needy patients are placed on dialysis in cold homes because they cannot afford to keep them warm – at the expense of their health as they risk the equipment failing and not will work.

Depending on the type of dialysis machine being used, patients require a recommended temperature between 15°C and 35°C.

“We believe that patients with kidney disease should receive extra support to heat their homes because if the heating is off and the room is too cold, the machines won’t work,” Ms Laud says.

“We want the heating in the dialysis room to be covered by the government because it’s not currently covered by the policy.”

Kidney Care UK found in its latest report that 98 per cent of patients with kidney disease are concerned about the rising cost of living. the cost of living.

An alarming 87 percent of patients said they had already turned off the heat, and 44 percent said they were skipping meals.

The charity is calling for urgent action to address the unique needs of people with kidney disease who face the impossible choice of forgoing essentials so they can continue to pay living expenses.

Quin, 44, who lives near Workington, Cumbria, was diagnosed with polycystic kidney disease shortly before his 30th birthday. An inherited disease causes clusters of cysts to form in the kidneys, which eventually grow in size and lose their function.

Mr Quinn, who has three children of his own and whose wife Karen has seven children, tells the story I He managed to delay dialysis for as long as possible and only started life-saving treatment three years ago when his kidney function dropped to just 2 percent.

He recently had surgery to remove one kidney because it had grown to 11 pounds. The self-employed truck, excavator and handyman driver is currently unemployed and on Universal Credit, which has boosted his monthly income from £3,000 to £850 a month.

“My biggest concern is the future, when I can’t afford treatment,” he admits. “If I don’t go on dialysis within four weeks, I will die – it’s hard, but it’s true.

“The cost of living affects people’s lives too much. When I was in the hospital on dialysis for this operation, I worked from 12 to 3 pm during the day, then came home and took a shower before going straight out the door to go to the room at dusk to give me dialysis.

“Then I would come home, go to bed, and then get up at 4:30 to do it all over again. I couldn’t spend time with my wife and kids until the next weekend. By then I would have been completely devastated, but I had to work so hard to pay my electricity bills and live.”

Andy says that he is now on universal credit, financially life is very hard. He says he gets about £42 from the hospital fund to cover the cost of electricity to run the machine, which he is grateful for as it means he can get dialysis at home, but he says it’s a drop compared to the actual extra expenses. bucket. Costs for kidney patients.

“Going from £3,000 a month to £850 is awful. My wife and I are coping, but it’s a nightmare.

“But not only does the dialysis machine cost money, but the heating in this room, the lighting and the cost of charging a mobile phone in case something goes wrong with the machines.

“I don’t want to be in the hospital and go there for hours three times a week. I want to use a dialysis machine at home.

“Therefore, the compensation covering the operating costs of the machine is fantastic. But the downside to this is that it is very popular on the NHS. Why isn’t the government giving more support to patients with kidney failure who have this terrible disease they didn’t ask for?

“What scares me the most is people in their homes doing dialysis in the cold and in the dark to survive, with blankets around them, because they are too worried about how they pay their electricity bills to turn off heating. . IN.

“My disease is incurable and there is no cure. Even if I get a transplant, the new kidney will be afflicted with PCKD, and I won’t be able to get rid of that kidney until after six or seven years.

“Dialysis is so important to me and thousands of other kidney patients because they need it to survive. The government should support us and help us have a quality of life.

“There will be so many kidney patients already living below the poverty line, sitting in a cold room on dialysis, worried that they can’t afford to heat their homes.”

A government spokesman said: “We are committed to supporting the most vulnerable and NHS England is working to ensure that consistent measures are in place to cover the additional cost of treating home dialysis patients and that all eligible patients are aware of the measures.

“In addition, we have provided at least £1,200 in additional living expenses to the eight million most vulnerable households, and our energy price guarantee will save people over £700 between October 2022 and March 2023.”