‘Eating or breathing’: energy costs force stark choices on disabled people

People with severe disabilities and chronic conditions struggling in cost of living crisis, research shows

Soaring energy bills are forcing people with severe disabilities and chronic health conditions to choose in extreme cases between “eating or breathing” as they struggle to navigate the cost of living crisis, research shows.

According to a survey by the charity Euan’s Guide, people are either opting to reduce their use of vital, energy-intensive electrical medical aids and equipment – putting their health in jeopardy – or where this is impossible, cutting back drastically on food, heating and travel.

Respondents to the survey, many of whom have multiple and complex health conditions, variously report routinely skipping meals, cancelling trips to hospital appointments, switching the heating off and going for days without washing or showering, just so they can keep life-saving equipment turned on.

One said: “Everything has gone up, every part of my life is affected. I use a powerchair, stairlift, bath lift and a Cpap machine [to ensure the user continues to breathe while sleeping]. At times I feel like I have to choose between eating and breathing, because my bill a year ago was £60 [a month] and it’s now nearly £150.”

Another respondent, Karis Williamson, 24, of Inverness, who has a life-limiting form of muscular dystrophy and is permanently on a ventilation machine, told the Guardian she and her family turned the central heating off for long periods to ensure they could afford to use the medical equipment she relies on.

This includes ventilators and suction pumps to enable her to breathe, a feed pump, a powerchair, electric bed and hoist. “My home is full of equipment that keeps me alive and out of hospital, which also saves the NHS an absolute fortune … I wouldn’t be able to go without any of the everyday equipment and survive,” she said.

John Mcclafferty-Brown, 44, of Leicester, who has multiple sclerosis, cancer and arthritis, said he used a Cpap machine at night when he was asleep, but would often risk not using it during the day, even when short of breath, because of the expense, and the need to set aside money for basics such as food and heating.

Helen Bolland, 42, of Thirsk, an armed forces veteran who was medically discharged after being injured in Iraq, said she had cancelled hospital appointments because she could not afford the cost of travel. “The cost of living crisis means you make difficult decisions. I’m scared of running up a bill I can’t afford to pay,” she said.

Others said they could no longer always power up electric wheelchairs that enabled them to leave their home, or afford aquatherapy and swimming sessions that helped them cope with chronic pain. Some said they now stayed at home all the time and had in effect abandoned their social life, causing depression and anxiety.

The findings are from a cost of living questionnaire attached to the annual Euan’s Guide survey of disabled access to venues around the UK. Over 7,000 people responded to the survey, carried out last autumn. It found 68% of respondents had cut back on energy use and 55% said they were less active as a result.

“Not only do disabled people face the increased costs of fuel, food, and travel like everyone else, they have the additional cost of simply staying alive, staying active and staying well,” said Paul J Ralph of Euan’s Guide. “It’s a crazy situation when people cannot afford to run essential equipment to stay alive,” he added.

Earlier this month the Guardian reported on the plight of the Van Keoghs, who had been told by the NHS that it could no longer guarantee to send nurses to their home to treat their severely disabled son Marley because the family could not afford to keep the heat on overnight.

Campaigners have called for a special social tariff to cap the energy bills of people with disabilities and chronic health conditions who are intensive energy users out of necessity, and whose life and wellbeing is at risk if they have to cut energy use.

A government spokesperson said: “We understand this is a difficult time for families across the country, including those living with a disability, which is why we have put in place immediate support for this coming winter. This includes direct payments to vulnerable households worth £1,200, plus an additional £150 disability cost of living payment. On top of this, the government’s energy price guarantee will save the typical household around £900 this winter.”


Patrick Butler Social policy editor

The GuardianTramp

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