Published by BBC NEWS - 13th May 2022

Emma and her daughter Veryan

Image source, Emma Moss

A mother with a terminal illness is scared that she, and others like her, will run out of money to power the equipment that keeps them alive due to rising energy costs.

Emma Moss, 41, from Northampton, was diagnosed with motor neurone disease (MND) in May 2018.

She relies on a life support machine and other electrical equipment.

“Our lives are being put at risk because of the increase in costs of living,” she said.

Emma and Terry on wedding day

Image source, Emma Moss

A year ago Mrs Moss was paying £171 a month for gas and electricity, but this has now gone up to £469 a month, which is a third of her family’s income.

The former teacher wants the government to provide an energy grant for people in a similar situation.

“It is utterly unsustainable, but there is nothing that we can do about it,” she said.

At home, the mother-of-one uses an electric wheelchair, an electric ceiling hoist, a lift, two ventilators, air purifiers, a hospital bed, an air-flow mattress, a body drier, specialist seating, a vision-controlled communication device and a voice activated computer – all of which require power.

“We are doing our best to cut our usage, but I rely on so much equipment to keep me healthy, comfortable and alive that it’s almost impossible,” she said.

Emma and her daughter Veryan

Image source, Emma Moss

“Life with a terminal illness is very precarious. I’m so concerned for other people living with chronic illnesses and disabilities and I’m very aware some people are worse off than me.

“Many are going to be left in unsafe and unhealthy conditions because of these rising costs.”

She was forced to leave her job as deputy head of a school after her diagnosis, when she was told she had around two to five years left to live.

Her husband, Terry, gave up his personal training business to become her full-time carer, and they had no life insurance.

A fundraising page set-up by family and friends helped them pay for medical equipment and house adaptations.

“The extra money we are spending on energy bills is less money to make memories to look back on for my daughter Veryan,” she said.

“I wish I didn’t have to worry about this, I wish all I had to put my energy into was living the best life I can with my little girl in the time that we have left.”

2px presentational grey line

What is MND?

  • MND is a fatal, rapidly-progressing, disease affecting the brain and spinal cord
  • It attacks the nerves that control movement and takes away the ability to move, swallow and eventually breathe
  • There is currently no treatment or cure
  • It kills a third of people within a year and more than half within two years
  • There is a one in 300 risk of getting MND across a lifetime
  • It affects up to 5,000 adults and kills six people per day in the UK

Source: MND Association

2px presentational grey line

Emma and Veryan

Image source, Emma Moss

Mrs Moss runs a blog called Mummy with MND where she shares her experience of living with the terminal illness.

She is backing a petition calling on the government to provide a grant, so that people with a disability or serious medical condition can afford to run the equipment they need to stay alive. It has been signed by more than 13,000 people.

Alex Massey, acting head of policy and campaigns at the MND Association, said rising energy prices were jeopardising the ability of people with MND to live at home safely.

Previous research has identified that on average, people see their energy bills double following an MND diagnosis.

“As such, people living with MND are extremely vulnerable to rising energy prices of the kind we have seen this year.

“We urge the government to act now to ensure that people living with MND are supported through this crisis, and that nobody is forced to face financial hardship as a result.”

He said the charity had created an emergency grant scheme for people with the disease struggling to pay their energy bills.

A spokesperson for the Department for Business, Energy and Industrial Strategy said: “The government understands that some households with a disability or medical condition have higher than average energy costs.

“NHS England provides electricity refunds for users of certain medical equipment in the home, such as oxygen concentrators. Clinical commissioning groups are best placed to support their local populace.

“The government has also put in place additional support worth £9.1bn on top of existing measures to support vulnerable households.”

presentational grey line

Find BBC News: East of England on Facebook, Instagram and Twitter. If you have a story suggestion email

Related Internet Links

The BBC is not responsible for the content of external sites.



Tel: +44 (0) 141 946 6482

Address: Healthcare Skills Training International Ltd
West of Scotland Science Park
Block 7, Kelvin Campus
Glasgow G20 0SP