Families caring for a seriously ill child dependent on vital equipment to stay alive can now receive much-needed aid as we launch our new Cost of Living Support Fund to help UK families caring for children with short lives with their soaring energy bills.
An estimated 3,000 seriously ill children require long-term ventilation to stay alive; and around 6,000 are dependent on ‘assistive technology’. Concerned families are facing significant debt to keep machines running and are now confronted with difficult choices between feeding their family or heating their home, let alone being able to celebrate a Christmas together that may be their last.
We have launched the emergency Cost of Living Support Fund to provide financial help to families most in need. Families will be offered a grant of £250 to help with spiralling energy costs, meaning they can focus on making lasting memories with their child this Christmas.
Families like 11-year-old Isabel’s who has Batten disease and is bed-bound relying on a range of equipment to keep her comfortable and alive, which includes high flow oxygen therapy and suction to prevent her from choking: “We are running a mini-intensive care unit in our home” said mum Sophie.
“Isabel requires regular suction day and night to stop her from choking and to help her breathe. She isn’t able to control her own temperature so the heating in the house must run constantly to keep her temperature at a safe level.”
Sophie must run extra washing machine cycles due to Isabel’s incontinence and the family has a special hydrotherapy tub to help bring some ease for Isabel’s painful muscles.
Sophie continued: “We can no longer meet the rising costs of running all this. It means that Isabel will no longer be getting the relief she needs.”
“Every part of Isabel’s life relies on the use of machinery, which obviously runs on electricity. Our bills are skyrocketing, and we can’t manage for much longer. It’s terrifying and it just feels out of control. The reality is that Isabel will only live for a few months, or a year or two more if we are really lucky. And what will we be left with? Overwhelming grief and debt.”
Support needed
The new fund has been given a momentous start thanks to a generous contribution of £100,000 from Morrisons’ partnership fundraising. The initial donation from Morrisons will allow us to support 400 families caring for a seriously ill child. However, there are many more families struggling with the soaring cost of living who have nowhere to turn.
We are now appealing to anyone who can, to support the Cost of Living Support Fund so that more families can spend precious time together this festive season without the increasing worry of how to pay their bills.
Government must do more
While our new fund will help, more support is needed for families who rely on equipment to keep their children alive. We are urgently urging the UK Government to go further by:
- providing an energy assistance payment for families of seriously ill children to replace or supplement the inconsistent access to local NHS medical grants and reimbursement schemes
- doubling the £150 disability payment to reflect their higher household and energy costs
- uprating benefits urgently in line with current inflation rates
- exploring the idea of social tariffs as a long-term solution to reducing energy bills for household with high energy usage due to disability.
We will be asking MPs to stand up for seriously ill children and their families at a key All-Party Parliamentary Group (APPG) for Children Who Need Palliative Care event at Westminster on 23 November 2022. Time is short for these families, and they don’t have time to waste. Ministers must act now so that families can make the most of every moment they have together.
“It’s such a stressful time for everyone right now with the cost of living crisis,” says Andy Fletcher, our CEO. “But families who are caring for a child reliant on electrical equipment to stay alive are having to make very difficult choices. Some parents are missing out on meals to keep vital machines running, or not heating their home. Many will be thinking about how they can afford to buy Christmas presents this year.
“Our Cost of Living Support Fund will help with spiralling costs, thanks to the initial donation from Morrisons. We are asking the public – if they are able – to donate as well so that we can help as many families as possible caring for a seriously ill child make the most of every moment they have together this festive season.”
