Cost of living crisis hurts those with long

Jun 03, 2023

Incurable illnesses often come with hidden costs – and disproportionately affect the poorest in society

The cost of living crisis will disproportionately affect people with long-term health conditions

Horst Friedrichs / Alamy Stock Photo

For the 15 million people in England with at least one long-term health condition – an incurable illness requiring ongoing medical treatment – the cost of living crisis could prove life-threatening.

The dangers are particularly acute since long-term health conditions (LTCs) are often linked to poverty: on average, people in the poorest areas of the country are diagnosed with multiple LTCs 10-15 years earlier than those in the richest areas. LTCs also carry added day-to-day costs, for medical treatment and equipment, specific dietary requirements and specialist transport needs, among other things.

This means many people with LTCs already face untenable financial strain – which is being exacerbated by soaring inflation, squeezed wages and benefits, and rising food and energy prices. Combined, these create the perfect storm, worsening inequality and putting lives at risk.

One major problem is that benefits have not risen in line with the cost of living – which particularly affects people with LTCs, who are 11.5% less likely to be employed than those without a health condition, according to government data for England.

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There has not yet been any suggestion that prime minister Rishi Sunak intends to raise benefits in line with inflation, which stands at 10.1%. Sunak’s predecessor, Liz Truss, said benefits would rise by only 6%, in line with earnings – equivalent to a real-term decrease in payments, leaving many with LTCs out of pocket. Even if benefits do rise in line with inflation, recipients would still be 6% worse off than before the pandemic.

The outdated rules on free prescriptions further contribute to inequity. People with some conditions, such as diabetes or cancer, qualify for free prescriptions, while others, such as those with cystic fibrosis, do not – meaning life-saving medications can cost £9.35 each. While those on benefits can receive free prescriptions, some 1.1 million people in the most deprived tenth of the UK population are disabled but do not receive disability benefits, which could be because their condition is ineligible, because they have not applied, or because the median wait time after making an application is 20 weeks.

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Patients can apply for prescription prepayment certificates, which work like an all-inclusive subscription and can reduce costs if medicines are regularly needed. But the upfront payments – £30.25 for three months or £108.10 for a year – are unaffordable for many, leaving them with no choice but to pay almost £10 every time they need more medication.

As a result, many people on low incomes are being forced to ration medications. A recent survey by Asthma + Lung UK found that one in six people with lung conditions are attempting to prolong the life of inhalers by forgoing daily preventative use, while 6% are not collecting prescriptions. This could lead to life-threatening asthma attacks and hospitalisation – and almost half of respondents said their condition is worsening due to their cost-saving efforts. Similarly, a third of people with multiple sclerosis are reducing or stopping treatments due to costs, according to a survey by the MS Society.

Some medical devices are also not funded by the NHS, meaning people must pay out of pocket to reap their benefits – which can be extremely expensive. Thirty-one-year-old Rick, who lives in Cheshire, has had type 1 diabetes for 27 years. During that time, he has seen huge advances in diabetes technology, which has made his life easier – but he says access to these technologies remains varied in the UK, and not everybody receives it on prescription.

Like many people with type 1 diabetes, Rick uses an insulin pump linked to a continuous glucose monitor (CGM) to constantly deliver insulin and monitor his blood sugar levels. The devices work together in a practice known as ‘looping’, which can hugely improve people’s lives but is available to very few on the NHS.

While Rick’s insulin pump is provided by the health service, he chooses to pay for his own CGM. “I moved over to using an insulin pump around four years ago… since then I’ve moved to another pump where I can use [a CGM] to loop. My blood sugars have never been this stable but at the cost of £200+ each month… I won’t be able to afford it every month,” he said.

“But what’s more concerning for me, at least, is those already struggling and close to the breadline, having to make a choice between basic essentials or self-funded items.”

The 54% increase in the energy price cap this April, which is likely to rise again in the coming spring, will worsen many of these problems – and create new ones. With higher energy bills, many will be reluctant or unable to use their central heating, which may have serious implications for those with respiratory or cardiovascular conditions – cold heightens the risk of asthma attacks, mould-induced infections and heart attacks, all of which increase avoidable hospital admissions.

The rising energy costs will also prevent many with LTCs from using electronic medical devices, such as nebulisers, machines used by people with severe asthma to turn liquid medicine into a fine mist. Already, one in ten of those with lung conditions has reported reducing the use of electrically powered medical devices.

My blood sugars have never been this stable but at £200+ each month… I won’t be able to afford it

All of this is on top of pre-existing white goods poverty. People with conditions such as insulin-dependent diabetes or cystic fibrosis need their medications refrigerated. Yet in January 2020, benefits charity Turn2Us reported that 4.8 million people in the UK lack at least one household appliance, including 900,000 who do not have a fridge. Those with LTCs and other disabilities were more likely to lack appliances.

Food insecurity in the UK is also twice as high among those with LTCs, who are three times more likely to be referred to food banks, according to research by the Trussell Trust. The divide may be growing, with food costs having risen by almost 15% since last year. Shockingly, one in three people with cystic fibrosis ran out of food this year, causing more stress and detrimental effects on health.

“People with hidden disabilities often make hundreds of extra decisions per day,” said Rick. “Unfortunately, this cost of living crisis means another burden [for those with LTCs] on top of the stress that the population of the UK is already feeling.”

The current situation is a damning indictment of this government’s lack of concern for inequalities. In her first parliamentary speech last month, then-health secretary Thérèse Coffey, who has since been replaced by Steve Barclay, made no reference to health inequalities. Nor did Coffey announce the publication of the white paper on tackling health inequalities, promised by yet another former health secretary, Sajid Javid, earlier this year to address inequities revealed throughout the Covid pandemic.

There are several immediate actions the government can take to tackle the crisis of health inequalities. It must commit to the Health Disparities White Paper, to set the country on a path of equity-focused recovery, and increase benefits in line with inflation to curtail extreme financial pressure.

Sarah Woolnough, the chief executive of Asthma + Lung UK has also called on the government to provide additional funds to cover higher energy bills incurred by using medical equipment and to end unfair prescription charges.

While these recommendations would not end inequalities, they are essential steps that our government has the power to take. As Michael Marmot, the director of the Institute of Health Equity, put it: “If we require anything of government, at a minimum, it is to enable people to have the means to pursue a healthy life.” This government would do well to heed such wisdom.

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