The mother of a disabled teenager has launched a fundraiser to help families who have children with life-shortening conditions with their energy bills, a year after Kate Winslet donated £17,000 to help with hers.
Carolynne Hunter’s 13-year-old daughter Freya has severe complex health problems and disabilities, is non-verbal and blind and requires full-time oxygen and at-home nursing care.
A £17,000 donation from Winslet in November of last year to a GoFundMe Ms Hunter set up to support with electricity bills helped “tremendously”, with the mother now in a position where “we don’t have to worry about our energy bills”.
The 50-year-old, who is a project lead for charity Pamis and lives in Stirlingshire, Scotland, now hopes to help families with disabled children across Scotland, through the fundraising platform.
She told the PA news agency: “Kate saw me campaigning the [Scottish and UK] governments and wanted to donate to me to help with my energy bills, so GoFundMe contacted me and helped me set up a GoFundMe page so she could.
“This then went viral and many more kind people donated too.
“Despite this, I have continued to campaign to the Scottish and UK governments to try and push for a social tariff for families like mine so they can think about how they can make their homes more energy efficient and to get them to think about how we can support our families in a more appropriate way.
“I worked with GoFundMe to set up a fundraiser to support families this Christmas who are in a similar situation to me last year to hopefully raise money to help them with their bills, but whilst doing that, it can also give me a platform again to start talking a bit more widely about what the UK Government had promised last year in terms of a social tariff.”
Social tariffs are discounts available on broadband, energy, mobile contracts and water bills for people who are on low income or in financial hardship.
Money raised from the fundraiser will go to Children’s Hospices Across Scotland (CHAS), which provides support for babies, children and young people up to 21 with life-shortening conditions through hospices, home care and hospital teams.
Ms Hunter also spoke about what has happened to Freya since that donation.
She said: “Since that donation, Freya became really ill in December – she got the flu and then I caught it, and she ended up in hospital and I got pneumonia.
“She was discharged and then ended up going back in and it wasn’t until February that we started to recover.
“That was very difficult, but thankfully we were able to keep the heating on and maintain the house and I don’t have the financial worry like some parents who have to worry about their bills and the cost of living.”
She added that looking after children with a disability tends to also have an impact on the mental state of carers.
“When you’re looking after a child like Freya, it’s just complete intensive care constantly, you don’t get a break,” she said.
“As much as I have support to look after Freya, she is ultimately my responsibility and I am on call constantly.”
“I have recently been diagnosed with complex Post-traumatic stress disorder (PTSD) and that will be common among other families, that is just the way it is.”
She has called on both the Scottish and UK governments to do more to help vulnerable families.
“The Scottish and UK governments have not provided adequate support for families with a high level of medical need,” she said.
“They have promised social tariffs and health board support at meetings and FMQS.
“However, [they have] still not delivered to families.”
She added: “Reducing the debt or writing it off could also be done – but it has done nothing and families are being driven into crisis.”
She said that health boards should also think about “how they can support locally” and about the equipment and electricity used by families.
A Department for Energy Security and Net Zero spokesperson said: “We recognise the cost-of-living challenges families are facing and spent £40 billion paying around half a typical household’s energy bill last winter.
“Energy prices are falling and our Energy Price Guarantee remains in place to protect people until April next year.
“We’re also continuing to support the most vulnerable, with three million households expected to benefit from the £150 Warm Home Discount, £900 for those on means-tested benefits, and an extra £150 for disabled people.”
Energy Minister Gillian Martin said: “No parent should ever have to worry about how they will afford essential care for their children, and I would like to express my sympathies to Carolynne Hunter and her family.
“The Scottish Government has done and continues to do everything within our power to support the many thousands of households who continue to struggle with their energy bills.
“We trebled our Fuel Insecurity Fund to £30 million this year, and the bulk of this is set to be distributed throughout autumn and winter so that those who are most at risk of self-rationing or self-disconnecting get tangible help when they need it most.
“Our Child Winter Heating Payment provides families of severely disabled children and young people with financial support, while Scotland’s Child Disability Payment helps cover the extra costs of caring for a disabled or terminally ill child or young person.”
The link for the fundraiser can be found here: https://www.gofundme.com/f/help-save-children-amid-the-energycrisis