“I can’t have her starving to death” – Carer Clare describes energy bill terror

We’ve mentioned several times before on this site about the impact of rising fuel bills on disabled people. It’s not just that if you are less mobile you need more heating, it’s about charging up wheelchairs, and running life sustaining equipment like feeding pumps.

Clare Steel* is a Labour Councillor in West Dunbartonshire. She cares for her 15 year old daughter Katie, who has complex medical conditions which mean she can’t walk, talk or swallow.

Katie depends on nine separate pieces of electrical equipment to keep her alive and make sure she can get washed and go up and down the stairs and move around and communicate- the very basic things required for human dignity.

Yesterday Clare spoke to Radio Scotland about her absolute terror about how she is going to pay the bills after 1st October. Right now I want to bundle up every single Conservative MP and put them in a room and make them listen to her. And I also want every person in the country to hear it so that they can understand the reality carers and disabled people are facing. You can listen here from about 20 minutes in.

Clare talked about the sort of equipment Katie has:

“Katie requires 24 hours care. That involves lots of medical equipment. Because Katie can’t eat, she has a pump which pumps high calorie milk into her bowel for 16 hours a day.”

She also has an 18 stone electric wheelchair which has a massive energy gobbling battery pack to get around as she can’t walk, a chairlift to get her up the stairs to her bed, an electric bath chair so that she can get in and out of the bath safely, a special bed and aids which enable her to communicate.

Every piece of equipment in Katie’s life allows Katie to be alive and function daily. I don’t have a choice about having these on charge constantly.

Clare was in tears when she asked:

How am I going to be able to keep Katie alive day in day out and not worry about how I am going to pay my energy bills. It’s just the reality. My worry is paying my electricity bill to have Katie’s machines. That’s not even including the cost of heat.

We don’t have options. There is no options. I was looking at a bath chair online which I could blow up so I might not have to use the bath chair, but that is only one thing. Katie’s wheelchair is 18 stone with a massive battery pack. Do I tell her she can’t have independence?

She needs her suction machine. I can’t have her choking to death. She needs her feeding pump, I can’t have her starving to death.

I don’t think there are words strong enough to describe my absolute fury that this Government is standing by while people suffer such worry and fear. How dare they? How can they fail to realise that this is a moment of crisis where they need to show leadership and compassion?

Money saving expert Martin Lewis was brilliant on BBC Breakfast yesterday saying that the Government should have had a plan in place long before now. He said that people would die if they did nothing and that this news has already had a severe impact on people’s mental health. “I’m not catastrophising. This is a catastrophe.”

Any decent Prime Minister, any decent person who was hoping to be Prime Minister within the next couple of weeks, should have been out there at 7 am yesterday morning offering comfort, offering reassurances that people would get help through this. Ed Davey called for this price rise to be cancelled weeks ago. And what of Liz Truss yesterday:

There will have to be help for carers, disabled people and everyone else struggling with energy costs in the coming months. That is inevitable. Liz Truss (the most likely new PM) will be forced by the strength of public feeling, not her own conviction or empathy, to jog on from her position stated at hustings that it is not Conservative to give handouts. When the help comes, the chances are that it will be inadequate.   But we liberals must not stop fighting until people like Clare no longer have to live in fear and dread.

* Back in 2011, one of the first things Willie Rennie did as Scottish Lib Dem leader was to stay overnight with Clare, her husband Derek and Katie and her sister Holly  He learned A LOT from that experience, and has been firm friends with the family ever since. He talked about the challenges the family faced in his first ever Conference speech:

But the experience that will stay with me is my 24 hours with Clare Lally and her wonderful family in Duntocher.

Clare and Derek have two very bright and charming four year old twin daughters Holly and Katie.

Katie was starved of oxygen at birth and as a result cannot walk, talk or swallow.

Through tenacity and strong human spirit she has survived numerous life threatening episodes.

That is remarkable. But what is even more remarkable is the sheer intensity of the care provided by Derek and Clare.

“24-7” is insufficient – it does not do justice to their focus over years.
To me this is a real test for all liberals.

Clare and Derek, their family and friends do it themselves.
They do not want the state to take over their lives.

They do want a little bit of flexible help to make life possible.

They want an enabling state. But we seem incapable of providing it.

They wanted to stay in their own, private home;

But the council refused to make alterations to their house unless they moved into a council house.

They reluctantly made the move.

Not unreasonably, they asked the council for a ramp to push Katie’s buggy down to the car.

“Oh no”, said the council. “That house isn’t suitable for a ramp”.

This kind of bureaucracy and blinkered thinking must change.

Clare is prepared to be awkward because she’s standing up for her family.

Now I’m working with Clare to take the lessons of my experience directly to councils and government.

We all need to work to improve support for the thousands of carers across Scotland.

For Katie

For Clare

For carers all across Scotland because it’s right, they deserve it and they need it now.

* Caron Lindsay is Editor of Liberal Democrat Voice and blogs at Caron's Musings

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8 Comments

  • The Tory response to the crisis is to refuse to go on ‘open’ media to answer questions; Truss is the prime culprit…
    Ch4 news, last night, highlighted the fact that they had asked for a government spokesperson and were refused..As usual the supine BBC main news carried no such damning referral…

  • Lorenzo Cherin 27th Aug '22 - 2:38pm

    Thanks for highlighting this, for we can honestly state, Caron, disability issues are all too often ignored by the powerful.

    It is outrageous that all those with such needs are not exempt altogether from payment for at least that basic energy need.

    The reaction, none, yesterday and throughout this farcical experience, one that witnesses a terrible duo battling to be pm, says much about our government.

    Truss is worse than Sunak, both worse than Johnson, in being out of touch with people’s real world experiences, and Johnson himself is awful, thus saying a lot about how far politics has sunk!

  • Peter Martin 28th Aug '22 - 10:20am

    Politicians aren’t getting to the root of the problem. If there is a shortage of there is only a partial solution which is to share out what we have in the short term. Moving money around doesn’t create any extra gas.

    We might remember the prophesies of Moses from our school days. One of these was that there was going to be years of plenty followed by years of famine. Sensibly, the Pharaoh decided to store some of the grain in the years of plenty so that there would be some available later.

    If he’d been advised by modern neoliberal economists he’d have been told to run a budget surplus with possibly a loose monetary policy during the good times but then tighten up with increased interest rates once grain prices, and others prices too as a consequence, had started to rise during the lean times.

    More liberal economists, but still with neoliberal inclinations, would have probably gone along with eating all the grain in the good years but then favoured taxing the ultra rich to hand the proceeds to the less well off in the lean years. This would only have worked, to some extent, if they’d then chosen to eat less.

    The fundamental question of a lack of grain, and how best to share it out, wouldn’t have been properly addressed by either side.
    In an emergency, there is precedent for putting aside any faith we might have in the workings of the market and introduce direct rationing.

  • Helen Dudden 28th Aug '22 - 11:39am

    The extra laundry and charging of Power Wheelchairs is my concern. Put on an extra jumper, what a cruel and thoughtless comment.
    There are complex issues concerning heating and eating. Children will get Rickets as a legacy from a thoughtless uncaring government.
    How thoughtless and dishonest this is becoming. We need more honesty in government.

  • Some promising news from Germany regarding their efforts to wean themselves off reliance on Russian gas supplies Germany: Gas storage filling up faster than expected ahead of winter

  • @Joe Burke – The one thing missing from the article is that Germany has the capacity to store circa 6 weeks of gas consumption; whereas the UK a couple of days and still the UK government are effectively doing nothing about it…

  • Roland,

    I understand Centrica has been authorised to reopen a large gas storage facility in the East of England Britain allows Centrica to reopen Rough gas storage facility
    Meanwhile France is having a lot of problems with its nuclear power and hydro-electric facilities Macron’s energy nightmare deepens as nuclear output plummets: ‘Prepare for rationing’

  • Helen Dudden 31st Aug '22 - 11:29am

    Many homes do not meet the Decent Homes Standards. Old storage heating, a must have in some Social Housing is still around today. Very expensive and inefficient.
    Insulation, and solar power works, but of course its a long term plan.
    Until, the idea is accepted that wasting energy with poor heating is wrong, we carry on the same.

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