People affected by MND have been disproportionately affected by the cost of living crisis. The Through The Roof campaign is aiming to get them the help they need.
How much does it cost you to manage your MND?
Managing motor neurone disease (MND) often means increased reliance on powered medical and assistive equipment, from 24/7 ventilation to powered wheelchairs and communication aids. The costs associated with running this vital equipment can quickly add up, placing further strain on households already facing the financial challenges of living with MND.
Our Interactive Electricity Cost Calculator is designed to help you estimate how much your essential equipment is contributing to your electricity bill. By inputting details about the devices you use and how often they’re running, you’ll receive a tailored estimate of your energy costs. You can also choose to receive this information by email, if you like.
The Cost Calculator is completely anonymous and secure – you won’t be asked to enter any personal information.
Start the Interactive Electricity Cost Calculator
How it works
- Select your equipment: Choose from a comprehensive list of medical and assistive devices commonly used by people with MND.
- Enter your usage: Input how often each piece of equipment is used, and we’ll calculate the associated electricity costs.
- Submit your data: Your responses will help us build a clearer picture of how energy costs are affecting the MND community. With this information, we can advocate for policy changes to relieve some of this financial burden.
Why participate?
- Understand your costs: Get an accurate estimate of the additional electricity costs related to managing MND.
- Support the cause: By sharing your data, you’re contributing to our efforts to secure improved financial support for the MND community.
- Raise awareness: Your participation helps us highlight to decision makers the urgent need for energy cost rebates for people living with MND, similar to schemes available for other medical conditions.
Through the Roof report
In 2023 we published our Through The Roof report on how the cost of living crisis is disproportionately affecting people living with MND.
Our report found:
- People affected by MND have been disproportionately affected by the cost of living crisis. In many cases, this forces people to make difficult, and sometimes impossible, choices between essential living expenses and their own health and wellbeing.
- The yearly cost of using and charging assistive equipment costs families, on average, £600 a year. However, families managing advanced MND can spend between £800 and £900 a month on electricity for assistive equipment, equating to an astronomical £10,000 a year.
- Many people with MND rely on assistive equipment to keep them safe, well and independent - but a quarter (28%) of families have said they have reduced their use of personal powered equipment in the last 12 months in response to rising energy costs. The crisis is forcing people to take damaging risks with their own health.
Our recommendations:
- We are calling on the UK Government to implement more targeted energy support for households affected by MND. Government had promised to consult on proposals for more targeted energy support – such as the Energy Social Tariff – throughout 2022 and 2023. But this has not happened, and the energy crisis is not over.
- We are asking UK Government to consult on targeted energy support.
What is an energy social tariff?
- One form of targeted energy support is an energy social tariff. The tariff acts as a discount on people’s energy bills. Tariffs already exist for other industries, such as water and broadband.
- We believe that the tariff should be delivered by discounting the unit cost of energy significantly below the market rate. This means people pay discounted prices at the point of purchase so that support is effective, immediate, and direct.
- Due to the high energy use of households affected by MND and their reliance on assistive equipment to keep people with the condition safe, well and independent, we believe that all households affected by MND should be eligible for an energy social tariff.
Information and support
Nicola and Mark's Story
Nicola is wife and carer to Mark, who is living with MND.
We’re using so much more electricity because Mark requires so many pieces of assistive equipment to keep him alive and independent – two hoists, wheelchair, ventilators, back-up ventilators, humidifier, the list goes on. They all run on electricity, and they all cost money to run. If Mark was in hospital, this would all be paid for but I’m having to absorb all the costs of the disease. I’m running a small hospital from home and I’m paying so dearly for it.
Just my monthly electricity bill was £800. How is this affordable? I’m doing my absolute best by Mark, but it’s unsustainable.
I’m working full-time because the costs of the condition means I can’t afford not to work. If I don’t work, then I can’t pay our mortgage. Our bills are through the roof but I’m battling to keep that roof over our heads.
Nicola
Get involved
Help us raise this issue with your MP or get involved in other ways.
Thank you for writing to your MP
Over 800 supporters wrote to their MPs inviting them to meet with us in Parliament to discuss our call for Government to implement more targeted energy support for households affected by MND.
Government had promised to consult on proposals for more targeted energy support – such as the Energy Social Tariff – throughout 2022 and 2023. But this has not happened, and the energy crisis is not over. We are asking UK Government not to renege on their promise and to urgently publish the consultation.
Thanks to you 13 MPs met with us to discuss how the cost of living crisis disproportionately affects people living with MND and other terminal illnesses and the possible policy responses which could address this challenge.