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Making sure seriously ill children have power is a priority

News and comment

With reports that there may be planned energy blackouts across the country this winter, we have had a number of calls to our helpline from families of seriously ill children who rely on live saving medical equipment at home. Parents are understandably worried.

Many of these children have multiple complex needs and are dependent on technology to maintain their health status. The use of each piece of technology or equipment can be ongoing, intermittent or even kept in reserve for emergencies, and while some is used only occasionally, or for a few minutes a day, some children and families rely on their equipment for 24 hours a day.

The potential for having power cut off for hours at a time can have a massive impact on children who rely on technology to maintain their health. The most stark examples are of course cases where children rely on ventilators or other life sustaining equipment, which they simply cannot do without.

But there are many other children and families who rely on equipment which, although not as immediately life-threatening if turned off, can have a huge impact on a child’s comfort and quality of life. For example, overnight feeding, saturation monitors, and electrically powered mattresses, all of which the loss of could cause anxiety and potential deterioration to the child.

Priority register

Families who rely upon medical equipment can, and should, register themselves on their energy supplier’s ‘priority register’. Being on the priority register means they will be given advanced notice of power cuts by the energy suppliers, and they should receive priority support in emergencies.

If you have medical equipment, you are probably on this register already – if the equipment was provided through the NHS you will automatically be added to the register, but if you’re not sure you should contact your energy company and make sure you have been added to the list.

In addition some medical equipment has back up battery power supply, and additional spare batteries can also be kept charged. If you don’t already have any spare battery capacity, or you’re unsure what is available for your equipment we strongly suggest you speak to your health care teams, especially if it is equipment that has been supplied by the care team. If you do have battery packs then you should ensure that they remain fully charged.

Contingency plans are needed

In practice though we know that even with advance warning of power cuts, many families are worried about how planned power cuts will affect their child’s care. Together for Short Lives is urgently seeking clarification from the Government and Energy Companies about what concrete plans will be put in place to help ensure that every family caring for a seriously ill child has a practical contingency plan in place to ensure that they will be able to continue to rely on powered medical equipment through any planned power cuts. We need to ensure that no children’s health is put at risk by power cuts this winter.

If you’re caring for a seriously ill child and are worried about this issue, our helpline is available on weekdays between 9am and 4pm. If you would like to talk to someone about your worries before our helpline is next open, you could contact the Samaritans who are open 24/7 on 116 123.

Dr Helena Dunbar is Together for Short Lives Director of Service Development and Improvement.

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