Go back a step

"Going without food means my health has suffered"

Monday 15th December 2014

Ellen and Cole

Our Counting the Costs campaign is calling for the UK government and energy companies to level the playing field for families with disabled children.

Our research shows that many parents and carers are going without food and heating to pay for the costs of raising their child. Some of them, like Ellen, whose six year old son Cole has Global Developmental Delay, is suffering ill health as a result.

"I used to work before Cole was born and tried to work from home, but it was just too difficult to do this and deal with Cole's needs and medical appointments at the same time.

"We are on a pay key meter, and heating costs me about £30 a week. It's a lot of money, but it's too risky for me not to have the heating on when Cole's there. A drop in temperature could result in Cole having seizures. To save money I don't have the heating on at all when Cole isn't there so I can ensure that heating is available when he's at home.

"Cole has a lot of hospital appointments but because he uses a wheelchair, public transport - because it is so unreliable and you can't guarantee a space - just isn't an option. Last November Cole had to spend a month in hospital, and it cost me a fortune in parking and petrol costs alone.

"I often go without food - just a piece of toast say during the day - so that my children can eat. Going without food, coupled with a lack of sleep because I am up in the night looking after Cole, means that my health has suffered and I have fatigue and am constantly tired."

The Counting the Costs campaign

Together we can stop carers like Ellen going without the basics.

We've written a template email that we want you to send to your MP, which asks them to:

  • push the government to increase access to financial support and work
  • call on all energy companies to offer a fairer deal to households with disabled children
  • tell families with disabled children about the financial help that's available.

Take action and send our campaign email to your MP.

If you have any questions about our research or want to know more about getting involved in the campaign, email Una.summerson@cafamily.org.uk or call 020 7608 8742.

 More information