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“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.

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