If Elijah could not use these machines he would die (Picture: Kaddy Thomas)
The moment I clicked on my combined energy bill last week, and saw it was at £230 a month – a rise of £85 – I was in shock.
It made me feel physically sick with stress.
I am a single mum with Apert syndrome taking care of my wonderful 16-year-old son Elijah, who has complex health and medical needs. I’m one of the UK’s 6.5million carers.
But I am also massively struggling with the cost-of-living crisis. I’ve thought of every possible cost-cutting measure but none of them work for my family.
In a recent report, Carers UK found that the proportion of carers unable to afford their utility bills has doubled since last year. One in six carers are in debt.
I’m one of those struggling. Rises in gas and electric bills are only one part of the picture – if we add in food, travel, household items and subscriptions to the various things we need to make life work, it all adds up.
Apert syndrome is a rare genetic condition that me and Elijah were born with. People with Apert syndrome can have distinctive malformations of the skull, face, hands and feet and need numerous operations to rectify this.
Elijah also suffered a catastrophic brain injury as a baby following a routine surgery, which led to numerous health conditions, including epilepsy, scoliosis and fluid on the brain.
As a result, I can’t work because I manage the team of 15 carers that Elijah needs. His health is so unpredictable – as I write this he is in A&E for the fourth time this year. This is the reality for countless carers like me.
Even before this cost of living crisis, Elijah’s care needs were high.
He gets two-to-one care, meaning in any 24 hours, there are an extra four adults in our home.
Apert syndrome is a rare genetic condition that me and Elijah were born with (Picture: Kaddy Thomas)
On top of that, we have many other people come in to support Elijah weekly, such as his physiotherapist, paramedic, doctor and social worker.
Additionally, there are often meetings – held in our home – about how things are going, how the team can improve and training sessions about using the equipment and handling and moving Elijah, basic life support training and postural care.
Elijah needs a lot of equipment to monitor him and keep him alive, like his ventilator, his bed that tilts, raises and lowers him, hoists, and machines to help him use the toilet. It all runs on electricity.
If Elijah could not use these machines he would die. They are critical for keeping him alive and maintaining a good quality of life. I have no option but to fork up whatever costs are needed to cover our rising bills.
Then there’s the fact I need to use the washing machine and tumble dryer every day because he needs …read more
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