Report: Terminal disease patients trim vital equipment use amid soaring living costs

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.

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, backup ventilators, a 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 its 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 the 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 the Government to do more to help vulnerable people and deliver on their overdue promise for a consultation.”