Disabled children can’t afford to use their ventilators this winter. Politicians need to face reality

As the winter chill hits and the energy crisis starts to become very real, it is hard to shake off the feeling that not only is suffering becoming normalised in this country, but those in power have an ever-decreasing interest in easing it.

Few examples are starker than the news that the NHS is trialling “heating prescriptions” to give to people who can’t pay their soaring energy bills. Some patients need electricity for disability equipment, such as ventilators, wheelchairs and feeding tube pumps. Others need to put the heating on to ward off stiff arthritic joints or to ease breathing. Warmth and electricity used to be human rights – now they’re medicine.

In his autumn statement earlier this month, the chancellor, Jeremy Hunt, pledged to target cost of living support to “the most vulnerable”. “British compassion”, he said, would be at the heart of government policy during these difficult times. Reality is turning out to be quite different. Those who rely on the state pension or benefits may have been given a reprieve with their payments being uprated with inflation, but they must get through a cold winter before the 10.1% rise kicks in next April. Even when it does arrive, thanks to historically low benefit rates, the increase won’t come close to covering the essentials.

Meanwhile, the government has promised additional energy help next year in the form of a cost of living payment of £900 for households on means-tested benefits, but only £150 for people on disability benefits. According to the money saving expert Martin Lewis, these unequal rules mean that thousands of disabled people and carers on particular benefits will miss out on £650.

That the government has chosen to tighten eligibility for the warm home discount, so that half a million households – many of which will include disabled people – could lose this support, just as energy costs spiral, is an insight into how much their pledge to protect “the vulnerable” is worth.

Talk to community groups and charities, and the impact of mounting bills is already showing. Over a third of families with seriously ill and disabled children have cut back or stopped using life-saving disability equipment because of rising energy costs, according to the charity Contact. Of those, 40% say this is making their child’s health worse.

Meanwhile, the Royal National Institute of Blind People reports that blind and partially sighted people are not turning on their specialist lighting, despite needing it to move around the home safely. The disability charity Scope tells me it has heard from disabled people who are considering turning off the personal alarms that are meant to trigger help if they fall, as they can no longer afford to run them. Many are already cutting back on showers; their disability means it takes longer for them to wash and each minute costs more money. Others have been forced to give up their personal assistants who help them get dressed and go out, as they had to choose between electricity and independence. Some admit they are feeling suicidal.

If this is ministers protecting “the most vulnerable”, we can only imagine what hurting them would look like. Just like when George Osborne utilised the term during the 2010 era of austerity, the “most vulnerable” narrative has never been about the government helping people in need – but excusing the fact that they aren’t. The myth is perpetuated that some people in life are inevitably vulnerable, a stagnant group created by nature rather than a government’s political choices. It conveniently shifts responsibility away from ministers, suggesting that, say, a wheelchair user is unable to live a full life because of their disability, not because the government is withholding necessary support.

Away from Westminister, the truth is that millions of people in the UK don’t know how they are going to make it through winter. The news that the poorest people will end up shelling out nearly a third of their income by next spring just to pay fuel bills shows how unsustainable all of this is. A GP’s prescription pad will not patch up the holes in the welfare state.

It is not fearmongering to suggest that without sufficient support this winter, people are going to die. Even without energy bills rising, nearly 10,000 people in the UK perish every year from living in a cold home; human beings frozen in their own front rooms.

An upcoming Christmas campaign to encourage the public to switch off their energy to save cash will help some families be more energy efficient, but it is little use for disabled families. If you use a ventilator 24/7, “cutting back on energy” is not an option.

It is only real action from ministers that will make a difference. There are solutions, such as an energy social tariff that provides a discounted rate for disabled and low-income customers, or bringing forward the one-off energy payments to this winter, and increasing the support given to those on disability benefits. The recent story of Kate Winslet donating £17,000 to pay for the electricity for a little girl’s life-support equipment reveals the alternative: energy companies collecting bloated profits, while desperate families beg for help.

Every disabled child should be able to keep their oxygen running through Christmas. No one should have to skip dinner to keep their wheelchair charged. These are hardly radical claims, nor ambitious ideals. They are the bare minimum that any wealthy society should be striving for, and a threshold Britain is bleakly failing to meet. This is the truth no minister will admit: if anyone is “vulnerable” this winter, it will be because this government has failed to help them.

• Frances Ryan is a Guardian columnist

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