Disabled people who rely on powered equipment in their homes to survive have expressed serious concerns at the government’s failure to provide clear information about how they will be protected in the event of power blackouts this winter.
Disability News Service (DNS) has spoken to seven disabled people this week, all of whom rely on equipment powered by electricity to keep them safe, and in some cases alive, particularly in winter.
But not one of them has been able to secure details of any proper contingency plans that might be in place to ensure their equipment can keep running in a blackout.
National Grid* has warned that planned national power cuts are possible this winter, with customers in certain parts of the country likely to be without power for around three hours a day, although such an emergency is currently considered unlikely.
Following that warning, DNS has been trying for more than two months to clarify what contingency plans have been put in place by the government and the energy industry for disabled people who rely on powered equipment in their homes, such as ventilators and dialysis machines.
Two months on, neither the industry nor ministers have been able to produce any evidence that such plans are in place (see separate story).
The only clear advice to disabled people in this situation is to ensure they are on the Priority Service Registers run by their own electricity supplier and their local electricity distribution network operator (DNO).
Even if they sign up, they are warned they will not be exempt from any blackouts, and that if they need a continuous supply of electricity for medical reasons they “should seek advice from their local health service provider”.
Both the government and the energy regulator Ofgem have confirmed to DNS that people in this situation must make their own back-up plans rather than expect anything more than basic support from the government or the energy industry.
It has been left to individual disabled people to seek information from their electricity and NHS providers and “form their own back-up plan”.
Some of the disabled people DNS spoke to this week have managed to secure some reassurance from individual providers, but others have been left “extremely concerned” at the lack of information.
Alan Benson, a leading disabled campaigner, relies on a collection of vital equipment, including a day-time and a night-time ventilator, two powered wheelchairs, and an electric hoist, while he also needs to stay warm for health reasons.
When he became concerned last month at the lack of information about possible planned power-cuts, he contacted his electricity supplier, Good Energy, which admitted it had no contingency plans and simply referred him to the priority services register.
Benson told DNS: “Having set the tone by warning of potential power cuts and raised people’s anxiety, the current reassurance rings somewhat hollow.
“The different messages from suppliers is leaving many confused, including me.
“As a consumer, my relationship is with my supplier. I find it incomprehensible that I should need to understand the distribution network to make provision for my safety.
“This is not about sitting in candlelight for a few hours, it’s about being able to breathe.
“Disabled people are not stupid. We’re not expecting to be isolated from any impacts of power outages.
“It’s not unreasonable that our safety is considered and that we’re given advice and support to prepare.
“After all, if cuts do occur then emergency services don’t need to be spending time rescuing disabled people whose safety could have been protected.”
Good Energy and EDF, the other supplier contacted by DNS this week, both said there was little they could do in the event of an outage, with the responsibility lying with the DNO, although both said they were working closely with DNOs.
Nigel Pocklington, chief executive of Good Energy, said he was concerned at the lack of clarity from the government on contingency plans.
He said: “Emergency power cuts this winter remain very unlikely and grid operators, government and energy suppliers must communicate responsibly about this as a potential situation.
“This means not only saying ‘it’s unlikely, make sure you are on your network operators’ priority services register’.
“That is important, but those who are medically dependent on their energy supply need to be absolutely clear on what being on a priority services register actually means, so they can plan accordingly.”
He added: “As an energy supplier we are not physically operating any infrastructure, so there is a limit to what we can do in the event of an outage.
“Grid operators are limited too in that they cannot switch energy off or on for individual homes.
“Due to the understandably heightened anxiety this winter we are working more closely than ever with grid operators on this, but would like to see more clarity from government on the plans for vulnerable customers.”
Another leading disabled campaigner, Fleur Perry, told DNS: “Like thousands of other disabled people, I need a reliable supply of electricity to live.
“My ventilator has a back-up battery lasting six hours, and I have a few wind-up torches, but that’s it.
“Some of my equipment does not have an internal battery, and so becomes unusable.
“Every time there’s a power cut, I wonder how long it’ll be, whether I’ll need to travel to charge up, and if friends are OK.
“Emergency planning must include disabled people, and go beyond just putting names on a register.
“What we need is information about what will happen, and access to the right equipment to be prepared for power cuts.
“We also need an energy infrastructure that is affordable, sustainable, and reliable.”
Journalist Raya Al Jadir relies on a ventilator 24 hours a day, and she contacted EDF and the hospital where she regularly receives treatment, the Royal Brompton, after she became concerned about the possibility of winter blackouts.
EDF reassured her that “they will get to me within an hour or less to provide emergency energy” if there is a blackout.
The hospital has given her a spare ventilator and batteries, so she now has three ventilators that she charges daily, but it told her that many other patients with muscular dystrophy had raised concerns.
She added: “Like Covid, we are not thought about, and everyone is clueless on how to deal with it if it happens, which is a reminder that we are left to deal with this alone.”
A spokesperson for the Royal Brompton and Harefield NHS Foundation Trust said: “We recognise some of our patients can be in a difficult position and we are working with them on an individual basis to help them as best we can.”
An EDF spokesperson was unable to confirm how many customers have been given the kind of promise made to Al Jadir, but she said: “As a supplier, we continue to work very closely with the DNOs to ensure customers can be supported in the event of a power cut.
“We are ensuring that we have identified any of our vulnerable customers with these sorts of needs, that they are on our Priority Service Register, and that this information has been shared with the DNOs.”
Mark Baggley, manager of Choices and Rights Disability Coalition in Hull, uses a ventilator at night while he’s sleeping, and he first raised his concerns two months ago.
He told DNS this week: “I am extremely concerned that since raising the issue of possible power cuts and the effect on disabled people using lifesaving medical equipment, neither the energy companies nor the government have provided any reassurances or appear to have a plan of action.
“It appears that registering as a ‘vulnerable’ customer doesn’t provide any practical support.”
He added: “Like Covid, it seems that once again, disabled people are the last to be thought about, the most at risk and not important to the government or the energy companies.”
Martyn Sibley, co-founder of the disability marketing agency Purple Goat and the online magazine Disability Horizons, does not need a ventilator but has to keep warm and needs electricity to charge his wheelchair and his battery-operated ceiling hoist.
He also has heard nothing of any contingency plans to protect disabled people in the event of winter blackouts, other than the advice to sign up to the priority service registers.
He said: “No-one is able to stay healthy if they are freezing cold, but obviously with having a neuro-muscular disability, being sat down all day, having less circulation because I’m sat down all day, staying warm is harder and if I get cold, if I catch a cold that can be more dangerous.”
He said he imagines that disabled people who use ventilators and similar equipment and will be in more directly life-threatening situations “would be even more stressed and anxious about what would happen if there was a power cut”.
Michael, from Surrey, needs to keep warm, needs electricity for his stairlift to go downstairs for food or upstairs to use the bathroom, and needs power for a machine to maintain consistent breathing when he is sleeping, while his stock of insulin needs to be kept in the fridge.
He nearly died in the pandemic after spending four weeks in hospital with Covid in the first wave of the virus, which has left his lungs and body “fragile”.
He said he was confident that the emergency helpline run by his DNO, UK Power Networks, “would not leave me stranded or at risk if I called for their help”, following a previous suspected power-cut when they were “incredibly helpful and kind”, but he has not been contacted by his supplier – EDF – and said he has no information about any contingency plans.
Dave Wood, from Mansfield, needs electricity to charge his electric wheelchair, to power his riser-recliner chair, and for his fridge, where he keeps medication that costs the NHS £2,500 per injection.
He also needs electricity to run his gas central heating, which is vital because he has a heart condition and has problems regulating his body temperature, while he also has osteoarthritis.
He has prepared a “blackout box” of emergency supplies in case there are power-cuts – including phone-charging power banks, thermos flasks, draft excluders, torches, good quality candles, and food and snacks – as he does not have confidence in the preparations being made by the energy companies and the government.
He said he had tried to contact his supplier about his concerns but never received a reply, and he has had no contact from his supplier other than receiving an estimated usage of more than £4,000 for the next 12 months, for two people in a two-bed bungalow.
*National Grid owns the high-voltage electricity transmission network in England and Wales, and – as the electricity system operator – balances supply and demand to ensure homes and businesses in Britain have the electricity they need
Picture: (Left to right) Mark Baggley, Fleur Perry and Alan Benson
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