Help Power Precious Lives

With winter fast approaching, our thoughts at CHAS are occupied now more than ever with how the families we support will manage their energy costs during the coldest months of the year.

And yet with the Scottish Government's budget on the horizon, we are clear that a small commitment from Government could make a lasting difference in precious lives of some of Scotland's most vulnerable children.

Breaking down the big bills

The additional energy needs of children with life-shortening conditions living at home are now well-documented.

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 a wide range of factors including:

• Heating the home for children who cannot control their body temperature. Many homes need to be at a set temperature, in order for the child to remain stable and comfortable.
• Running life-saving equipment such as ventilators and suction machines.
• Running assisted living and mobility equipment such as air mattresses, hoists and wheelchairs.
• Lots of extra washing and drying of bedding, towels and clothes due to continence issues.

And the impact on their bills is staggering.

While the average combined gas and electricity bill for a medium-sized household is £172.81 per month, a large household's bill reaches an average of £239.22 per month. Shockingly, many of the families we support face bills that are double even the higher end of these figures.

Our analysis reveals the stark reality:

• Running a ventilator - an essential piece of medical equipment - costs £26 per month, while a humidifier (used alongside a ventilator) adds another £15 per month.
• An air mattress can set a family back upwards of £22 a month, and a height-adjustable bed can cost up to £9 a month.
• Washing and drying costs alone may exceed £180 a month.

And all of this is before they've even turned on the heating.

A call to action

We want to see families receive a tailored package of support to ensure these families can afford the energy needed to keep their children warm, safe, and comfortable this winter.

Our call is simple: we are asking the Scottish Government to provide a fixed sum of £25 a week to each eligible family of a child with a life-shortening condition, to help cover their energy costs. We estimate that this would cost less than £500,000 per year.

We fully appreciate that balancing the Budget will be difficult this year; there is no doubt that public finances are constrained.

However we are not necessarily asking for 'new money'. We believe that the money could be ringfenced from existing funds - namely the £30m Fuel Insecurity Fund. This is a fund that many of the families we support may be eligible to apply to, but the complexity of their lives means that in reality, they are unlikely to do so.

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."

In light of this reality, a direct payment is urgently needed to ensure the families most in need do not miss out on the support they so desperately deserve.

We would like to address this appeal directly to the First Minister, who on coming into office, pledged that his Government would support "those in greatest need" and "reduce child poverty".

In light of these commitments, we ask him and his Government to help power precious lives this winter.

You can find out more about this campaign in our full pre-budget briefing.