People with MND are hit harder by cost of living crisis.

• People affected by motor neurone disease (MND) have been disproportionately affected by the cost of living crisis. 
• Report by MND Association finds some hardest-hit families are spending £900 a month on electricity alone due to the cost of running personal powered equipment, while others are cutting back on usage.
• One carer said: “I’m working full-time because the costs of the condition mean 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.” 
• MND Association launches its Through The Roof campaign, calling on Government to implement more targeted energy support for people with MND.

People with motor neurone disease (MND) are cutting back on their use of essential assistive equipment, heating and food to reduce household costs as a result of the cost of living crisis, a report has found.  

Through The Roof: The experience of households affected by MND during the cost of living crisis, published today by the MND Association, reports that over a quarter (28%) of families affected by MND said they have reduced their use of assistive equipment in the last 12 months in response to rising energy costs.  

People living with MND rely on a wide range of powered equipment at home to maintain life and keep them safe, well and independent.  Pieces of equipment include artificial respiration systems, cough assist and saliva suction machines, hoists, adjustable beds and humidifiers, voice and vision-controlled communications equipment and powered wheelchairs.   

Some families described how they spend up to £900 a month on electricity alone, because of the cost of running assistive equipment, which equates to an astronomical £10,000 a year. 

Worryingly, people affected by MND are also cutting back on food and turning down their heating. Over half (51%) reported their household experienced difficulties paying for food, home heating and energy over the last 12 months. 

“We’re using so much more electricity because Mark requires so many pieces of assistive equipment to keep him alive and independent – two hoists, a 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 is the wife and carer of Mark who is living with MND

MND has a life-changing impact on the person diagnosed and those around them, with a key concern being the financial implications of the disease. Many people living with MND are forced to give up work and often a partner or primary carer will reduce their hours in order to manage caring responsibilities – this represents potentially a double loss of income. This not uncommon scenario exists on top of the significant extra household costs people living with MND face, such as the cost of care and support, housing adaptations, and increased energy and transport costs, estimated to be £14,500 per year on average - with some households spending far more to manage the impact of the condition.  

In response to these findings and ahead of the coming winter, the MND Association has launched its Through The Roof campaign to call on the Government to implement targeted support with energy costs for people with MND. The charity is also urging the Government to deliver on their commitment to consult on long-term measures to support vulnerable households with energy costs, such as an energy social tariff.  

“The findings of our Through The Roof report must come as a wake-up call for Government. People living with and affected by MND are having to make impossible choices between using essential equipment and facing costs they cannot afford. Winter is looming, and we’re adamant that people with MND shouldn’t spend precious time worrying about whether to eat, heat their home or turn on vital equipment. We need Government to do more to help vulnerable people and deliver on their overdue promise for a consultation.”

Alex Massey, Head of Campaigning, Policy and Public Affairs at the MND Association

Get involved 

Find out how you can support our Through The Roof campaign on our website. 

Support 

If you're living with or affected by MND, we have benefits, financial support and cost of living information available. Since January, we've funded over 949 grants, totalling £330,500 through our Cost of Living Support Fund. Discover more about Financial Support Grants and how to apply here.