Looking after a sick child is stressful enough without worrying about money

• Written by: Rami Okasha — CHAS — Chief Executive
• Published: 2nd March 2023

The issue of rising energy bills for families with seriously ill children needs an urgent solution.

At CHAS, we support children with life-shortening conditions and their families. These families are no stranger to hard times. They live complex and exhausting lives, with many caring 24/7 for their seriously ill children.

One mum described her day to me like this: “There is no break, no lie-ins, no lunch, can’t stop for a cup of tea, most days I just fight to get up, to have the will to carry on through another day.”

And now the cost of living crisis and rising energy bills are adding huge additional stress to families. In particular, soaring energy costs are hitting them incredibly hard, because many of the families we support simply have no choice but to use substantially more energy than the average household.

This can be due to life-saving equipment powered 24/7 at home by electricity – such as ventilators and suction machines. It can also be due to a need for higher room temperatures; some less-mobile disabled children get cold quicker, while others have health conditions that mean they can’t regulate their body temperature. Extra washing and drying due to continence issues, and needing to heat areas of the home to accommodate health and care professionals are often also contributing factors.

So what can be done about it?

Perhaps you heard news reports about Kate Winslet stepping in to pay the energy bill of Carolynne Hunter and her beloved daughter Freya, after Carolynne shared her story and campaigned tirelessly in the media.

And while we can all applaud the generosity of the Titanic star, celebrities shouldn’t have to step in where Governments have not. And more importantly, where does this leave the thousands of other families across Scotland who haven’t got similar support?  

A good next step would be for the Scottish Government to enable families to recoup the running costs of life-saving equipment.

For now, families can only recoup the running costs of oxygen concentrators, and families report that the scheme is not always reliable. We are calling for the Scottish Government and NHS Scotland to explore the reimbursement of running costs for all life-sustaining equipment for seriously ill children. There should also be more targeted support for these families through the social security system.

And at a UK Government level, we’re keen to see social tariffs as a long-term solution to reducing energy bills for household with high energy usage due to life-shortening conditions.

With the energy price guarantee set to increase by 20% on average from the 1^st April, we need to see more support, and we need to see it quickly. One of the mums I spoke to about the impact of rising energy costs told me she had to stop engaging with the news, because talk of future energy cost rises was simply too stressful on top of the daily worries she already contends with. “We do not have superhuman powers. We will break down”, she told me.

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