Together for Short Lives
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Cost of living – Support for families

More households are feeling the squeeze as energy prices rise and the increase in the cost of living. It is extremely worrying for families who already struggle to make ends meet and puts further pressure on those caring for a seriously ill child.

Many families who care for a seriously ill child 24/7 already have higher-than-average energy bills. Many seriously ill children rely on health and monitoring equipment that can’t be powered down overnight. And some seriously ill children are less mobile and have difficulty regulating their temperature, meaning families rely on constant heating to keep their child safe.

Energy bills may also be high due to the need for life-saving equipment such as:

  • oxygen concentrators
  • ventilators
  • feeding pumps
  • suction units
  • syringe drivers
  • condition-specific equipment (such as dialysis machines, for example).

General support

In May 2022, the government announced a package of measures aimed at helping households with the cost-of-living crisis. These include some one off payments to those receiving disability and other benefits, help with electricity bills over the winter and a Household Support Fund administered by local councils. You can find full details here, but if you’re eligible most of the payments should be made automatically. It may be worth finding out how your local council will allocate its Household Support Fund, you can find your local council here.

And it may also be helpful to review your overall household budgets, and see if you can find any savings on things like insurance or credit cards. The Money Saving Expert website has a helpful section on dealing with the cost of living crisis that might be helpful.

Support if you are caring for a seriously ill child

For families caring for a seriously ill child there may be some more specific support available. We suggest the following

  • Contact your energy company and make sure you are on the priority register. This provides you with free extra services and may help protect you from disconnection if you struggle to pay your energy bills if your supplier has signed up to the Energy UK Safety Net scheme. This is dependent on your energy supplier so we would recommend regular contact with them. For more information click here.
  • If you use any specialist equipment, contact the equipment company and make sure you are getting a rebate for the energy usage. 
  • Check that you are accessing all the benefits you are entitled to. If you would like to speak to a member of our team to help you with this please use the contact details below, or alternatively use the Turn2us benefits calculator.
  • Contact StepChange for debt advice.
  • Mencap, provides information and advice to people with a learning disability. They have produced an Easy Read Guide to the cost of living crisis, which you can access here.

If you are worried about rising energy prices please use our helpline services for support. Call us on 0808 8088 100 or use the Live Chat function at the bottom of the screen to speak with a member of our team. Alternatively, you can send us an email.

Family Resources