From DNS:
“Winter blackouts: Disabled
customers’ fear over confusion on life-saving support”
(Three separate pictures: head
and shoulders of Mark Baggley, Fleur Perry in her wheelchair in a garden, and
Alan Benson in his wheelchair in front of a brick wall)
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.
^ This story may be from the
United Kingdom, but the Disabled across the World have to “fend” for themselves
in times of crisis – Blackouts, Storms, etc. Even when companies and agencies make
emergency plans and when the Disabled inform these places of what help they
will need in the end it is 99.9% up to the Individual or their Caregiver to
figure everything out in order for them to survive. That is the sad fact of
today’s world. ^
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