Blog post #8 The Cost of Breathing

Breathe in…breathe out…breathe in…breathe out and repeat. Every second, of every minute, of every day, of every week, of every month, of every year, for the rest of your life. It’s a simple concept, and most of us take it for granted, a continuous cycle, and something that runs parallel to our everyday existence. It’s essential to life, which means we can not survive without it, we would simply die. The air we breathe is freely available all around us, our bodies consume this resource repetitively with every breath we take. Every single human being has the basic human right and need to breathe, and it costs nothing, after all the air we breathe is free. Or is it?

For people who live with ventilation, breathing is not something that comes naturally and not something that comes for free. The vulnerability and dependence on medical equipment, in order to breathe, comes at a cost, both financially, emotionally and physically.

For people who require oxygen, or use machines to condense oxygen, the additional costs of electricity to enable this is covered, and rightly so, given that without it, people would die.

For people who require ventilators, medical equipment that takes over the mechanism of breathing, and without which, would die, have none of the costs of electricity covered. Individuals, through no fault of their own, have to burden this cost, which has more than doubled during the costs of living crisis over the last 6 years. The set rates were introduced in January 2019 by regulatory body, Ofgem, and reviewed every six months.

In January 2023 the cost of electricity that powers essential medical equipment had almost tripled and in April 2025, in real terms disabled people were paying 62% more to breathe using a ventilator and 87% more to heat their homes. 

Using a humidified ventilator in a cold room increases the condensation in the breathing tubes which increases the risk of aspiration, increases the risk of colonisation of bacteria and greatly increases the risk of pneumonia. 

To combat this, many people who rely on ventilators to breathe at home, heat their bedrooms overnight, when using the ventilator, resulting in approximately 34% higher heating costs.

The British Thoracic Society published their concerns in June 2022, highlighting the disproportionate impact of rising electricity costs on home ventilation users, resulting in significant health inequalities. Financial assistance is available for home dialysis and oxygen concentrator machines*. However, despite raising serious concerns, there is still no current reimbursement or financial payments for electricity for ventilator dependent patients.

Many people who rely on ventilators to breathe, have complex co-morbidities, and therefore rely on other medical and mobility equipment alongside other associated costs including energy, fuel and transport. 

For an individual with the following essential medical and mobility equipment, the annual difference in May 2025 in extra electricity costs is £1090.

Disabled people, under the new welfare reform bill could be significantly worse off financially with many losing access to Personal Independence Payment (PIP) and Universal Credit’s health element. This could lead to a combined annual loss of £2400 or potentially more, for some.

This could see thousands of disabled people, who rely on essential medical equipment, including ventilators, at home, to stay alive, being nearly £3500 worse off per year.

The proposed changes to PIP, which will tighten up the eligibility criteria for the daily living component, aren’t yet clear how people who use ventilators will be assessed. Whilst the DWP will take into account aids and appliances it considers would be reasonable to be used, they score lower than help provided by another person. This is compounded by the fact that there is no section within the PIP assessment process that specifically assesses breathing as a daily living activity.

So what are the alternatives or possible solutions?

We need research that specifically looks at the additional living costs of people with disabilities or long term conditions that use essential medical equipment at home, including ventilators, to understand the scope of the issue. 

There have been several successful social prescribing pilots where health professionals prescribe heat to help vulnerable people to maintain a comfortable indoor temperature. These pilots have seen reduced hospital admissions and improved health outcomes. An example being the Warm Home Prescription scheme in 2022.

Social Tariffs are currently available for some people for costs such as home broadband but there are very strict eligibility criteria. They are designed to provide basic utilities at a lower rate to help those in need. However, people who rely on essential ventilation equipment at home, are not currently deemed in need and are therefore not eligible. Social tariffs for energy are targeted at low income families but unfortunately they don’t take into consideration the disproportionate financial impact of using essential medical equipment and they have now been phased out.

The cost of breathing is something that the majority of people never need to think about, but for those who rely on ventilators, many face an uncertain financial future without radical change to recognise that assisted breathing is an essential cost and should be factored into the welfare reform and UK Government and NHS policies and financial support.

This blog is part of a 5 year research project “Cripping Breath” which is looking at what it is like to live with ventilation. One of the issues raised, has been the cost of living and proposed welfare reform impact for ventilator users at home.

Do you live with ventilation or support those that do? Follow our Cripping Breath research here.

Liberty Bligh, Community Researcher - Cripping Breath

* If you’re using an oxygen concentrator, you might be entitled to some financial help. Oxygen suppliers will give you a rebate based on how much oxygen and energy you’re using.