Winter power blackouts would be devastating for people with disabilities, carers warn

Potential energy blackouts this winter are “frightening” and “clarity” is needed from the government, two parent carers of disabled people have said.

Energy prices have soared during the crisis, with National Grid warning that blackouts could be imposed on British households between 4pm and 7pm during very cold days this winter.

National Grid’s chief executive John Pettigrew said the blackouts could happen in January and February and would be the result of gas supplies from Europe being insufficient due to the war in Ukraine.

For those caring for people with disabilities, concerns are mounting over how vital care would be able to continue without gas and electricity.

Two different dads caring for their disabled children told NationalWorld that winter blackouts would have an impact on storing medication, use of equipment and overall caring responsibilities.

Dan McEvoy, 47, is a full time parent carer to his nine-year-old daughter Elisa who was born with Cerebral Palsy and is non verbal, deaf and registered blind.  She also suffers from a condition called dystonia, which causes uncontrollable spasms and twisting of muscles in the left side of her body, including her arm, leg and neck.

Due to the nature of her disability, Elisa relies on constant support and care and has to be monitored 24 hours a day, meaning Dan had to give up work as an IT Analyst eight years ago to look after her full time.

Elisa also suffers from central apnoea, which means when she’s sleeping her brain forgets to tell her to breathe. She has to be monitored during the night, which often involves someone staying awake next to her ready to help if she needs it.

The nine-year-old has several medications that she takes regularly, two of which require refrigeration, and she relies on a variety of medical equipment, including:

• A saturation monitor - to monitor her oxygen levels and heart rate. She is connected to this pretty much all the time. Sudden changes to her oxygen levels or heart rate might indicate she is struggling.
• Two oxygen concentrators - a mains powered machine that provides oxygen therapy.
• A feed pump - Elisa is unable to swallow so relies on nutrition being pumped into her stomach via a PEG.
• Hospital bed - mains powered to be able to adjust her position.
• Airflow mattress - to help minimise the risk of bed sores and maintain comfort.
• Three ceiling hoists - for moving her from bed to wheelchair, or into her bath system.
• A ventilator - to help with sleep apnoea. 
• Suction - to clear her mouth and throat to prevent choking on her own secretions.
• Acheeva - portable, adjustable, bed which is used daily as Elisa is unable to be seated for long periods of time.

As Elisa relies heavily on medication and medical equipment on a daily basis, Dan said he feels “anxious” about the potential of energy blackouts.

His family has contingency plans in place for power cuts, which would involve using oxygen cylinders and a battery pack for the oxygen saturation monitor, but this is only short term and depending on how quickly they can get the oxygen cylinders replaced, it could potentially mean Elisa would have to be hospitalised.

Dan has called for a scheme similar to that of WaterSure - which provides a low, fixed rate, tariff for those eligible, such as families who care for a disabled family member - to be introduced for energy.

The dad is also worried about the impact the cost of living crisis could have on carers, his daughter and in turn, the NHS. He said parent carers provide a level of support that allows their children to remain at home, but if they were unable to carry out the same level of care, their children would be hospitalised and provided with specialist care.

“The burden of this would lead to the collapse of the NHS and social care,” he said, adding that there is no way they can mitigate rising costs without risking their daughters’ health.

‘The future has no light at the end of the tunnel’

Paul Ridley, 57, from Milton Keynes, is similarly worried about the impact blackouts could have on his son. Keith Ridley, 33, was diagnosed with autism at the severe end of the spectrum at age 16, which means he is non verbal, incontinent, has no self help skills, no sense of danger, and needs help with dressing, washing and bathing.

He also suffers from erratic sleep problems, irritable bowel syndrome (IBS), epilepsy and during the Covid lockdown he was diagnosed with depression. Keith lives at home with his dad and his mum, Sarah, 57, and needs 24/7 care.

Keith is on medication for his epilepsy, some of which have to be kept at a certain temperature, and his medication shakes also have to be chilled. The family also uses the washing machine at least five times a day due to Keith’s disability needs, such as incontinence, seizures and meltdowns.

Medication might need to be replaced if it’s not kept at the right temperature and Keith would end up with “hardly any clothes” if they can’t get them washed and dried, Paul added. He also wouldn’t be able to have the showers or bath he requires to keep him clean and certain foods that are required for his IBS diet also have to be kept chilled.

Paul said that as a child he lived through the power cuts of the 70s, which he thought was “exciting” at the time, but as an adult unpaid carer caring for his son it is “frightening”.

He worries that if Keith has a bad seizure that requires medication at night, it could be “a big problem”, and it is not knowing for sure what is going to happen that is the “scariest thing”. Paul said they “need clarity soon”, as “it’s stressful enough being a carer without putting more issues like this onto us”.

Addressing the current cost of living crisis, Paul said he’s spending the same amount on the weekly food shop, but getting less and less for his money. He added: “If push came to shove, I would always put my kids first and go without so that they would have something to eat, but then any parent would say the same.”

Paul noted that his energy bills are also increasing, which is “a worry”, and charges for day care services are also increasing, leaving him feeling like “the future has no light at the end of the tunnel”.

“The help the government has given so far has hardly touched the service,” Paul said, adding that if carers cannot care any more due not eating and get ill or are not able to afford to care for loved ones, those with disabilities requiring help would then go into care, which “would cost the taxpayer, government and councils more money”.

Paul said unpaid carers are “the forgotten army of this country” and the government’s “main priority” should be to help ease the cost of living crisis on unpaid carers and people on low incomes. He also suggested the government increase carers allowance, benefits and for MPs to take a pay cut.

He said: “The Prime Minister and the government can come and see what it’s like, spend a day with us or meet us to chat. The government has to stop just saying stuff - they need to act. They also need to call a general election and to stop playing the Game of Thrones musical chair version.”

Paul, who said he hasn’t received any advice or support on how to care for his son during the crisis, is also concerned that people with disabilities will have their funding reduced due to potential NHS cuts. He said this could have “a major impact on my son’s life as we might not be able to afford to pay for his day care”. Paul added: “We all know what lockdown did to him and don’t want a repeat occurrence of that.”

‘Disabled people feel they’re being punished for needing to use more energy’

Two leading disability charities have called for more support from the government as they say disabled people feel they are being “punished” during the cost of living crisis.

Tom Marsland, policy manager at disability equality charity Scope, said: “We’re hearing from disabled people who feel they’re being punished for needing to use more energy. Lots of disabled people have to use more electricity to charge equipment like wheelchairs and hoists, or for life-saving equipment like breathing machines. Many people have to use more heating because it’s much harder for them to keep warm.”

He said that despite it not yet being the middle of winter, Scope is already being “inundated” with calls from disabled people who have cut back everything and are hundreds of pounds in debt on their energy bills.

“This is an emergency. The government’s £150 disability cost of living payment has not touched the sides,” he added. “A discounted tariff for energy, similar to WaterSure, would help get more financial support to disabled people who need it most. However there also must be much more consistency and better promotion of the scheme compared to WaterSure, which only a third of disabled households are aware of.”

Richard Kramer, chief executive of Sense, said the charity is calling for the government to introduce a social tariff in the energy market. He said: “This would provide discounted energy to disabled households who require higher energy use due to essential equipment such as electric wheelchairs or breathing machines. These are not luxuries or things households can choose to cut down on.”

Mr Kramer noted that disabled people are “facing a desperate situation”, with Sense research showing rising prices have already pushed three-quarters of disabled households into debt. He explained that while the government interventions to tackle the cost of living crisis so far are “welcome”, none have addressed “the disproportionate impact rising energy bills have on disabled households with inevitably high energy usage”.

He added: “Increasing benefits and introducing a social tariff will give disabled people a fair deal when it comes to paying their bills.”

A government spokesperson said: “We understand this is a difficult time for families across the country, including those living with a disability, which is why we have put in place immediate support for this coming winter. This includes direct payments to vulnerable households worth £1,200, plus an additional £150 Disability Cost of Living Payment.

“On top of this, the Government’s Energy Price Guarantee will save the typical household around £900 this winter. A review is considering how to support households and businesses from April 2023, focusing support for those in need while reducing costs for the taxpayer.”