People affected by motor neurone disease are disproportionately affected by the cost of living

Categories: Care and Policy.
People with terminal disease are reducing their use of vital equipment, heating and food, to combat cost of living crisis, report finds.

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  • People affected by motor neurone disease (MND) have been disproportionately affected by the cost of living crisis.
  • Report by MND Association finds some of the families with the highest level of need are spending £900 a month on electricity alone due to the cost of running personal powered equipment, while others are even cutting back on this type of usage.
  • One family 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 it’s 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 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.

    As the disease progresses, 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 with the highest levels of care 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.

    Nicola is the wife and carer of Mark who is living with MND. She said:

“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.”

MND has a life-changing impact on the person diagnosed and also on 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 may have to reduce their hours or even stop working also, 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 to implement 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’s ‘Through The Roof’ campaign is calling on the Government to implement targeted support with energy costs for people with MND. The charity is also calling on 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.

Alex Massey, Head of Campaigning, Policy and Public Affairs from the MND Association said:

“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.”


The MND Association focuses on improving access to care, research and campaigning for those people living with or affected by MND in England, Wales and Northern Ireland.

Through the roof report – Final 31.08 page3image9884336


About motor neurone disease (MND):

  • MND is a fatal, rapidly progressing disease that affects the brain and spinal cord.
  • It attacks the nerves that control movement so muscles no longer work. MND does not usually affect the senses such as sight, sound, feeling etc.
  • It can leave people locked in a failing body, unable to move, talk and eventually breathe.
  • Over 80% of people with MND experience changes to their speech, which may become slurred or quieter. Some people lose their ability to speak entirely.
  • It affects people from all communities.
  • Around 50% of people with MND experience some form of cognitive change while living with the disease. This can affect their thinking or behaviour. This percentage rises to around 80% for people who are in the advanced stages of the disease.
  • It kills a third of people within a year and more than half within two years of diagnosis.
  • A person’s lifetime risk of developing MND is around 1 in 300.
  • Six people per day are diagnosed with MND in the UK.
  • It affects more than 5,000 adults in the UK at any one time.
  • It kills six people per day in the UK, this is just under 2,200 per year.
  • It has no cure:

The MND Association has made five ambitious Promises:

We won’t rest until:

  1. MND is treatable and ultimately curable
  2. Everyone gets the care they need when they need it
  3. Every day with MND counts
  4. You are heard
  5. No one faces MND alone1

Through The Roof: The experience of households affected by MND during the cost of living crisis. Published by the MND Association 4 September 2023


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