Children’s Hospices Across Scotland (Chas) has launched a new cost of living crisis care appeal to support dying children and their families.
Many families cannot choose not to fill up the car as they need to get to hospital appointments, or to limit electricity usage as their children rely on numerous machines.
Chas is supporting families who have been forced out of work to care for their children and are struggling to cope with “some of the worst financial difficulties they have ever experienced”.
Laura Wingate and Marcus Dicks from Inverness have seen how much help from the charity can help families.
Their son Theodore, now two, was born with chronic lung disease, brain damage and a range of other complex care needs. He spent his first year in hospital and needs 24/7 care in case he stops breathing.
Mr Dicks found himself unemployed and unable to claim furlough as the pandemic hit which he described as “so stressful”.
‘We need to stay awake in case he stops breathing’
Theodore is wheelchair-bound, ventilated and tube-fed.
Mr Dicks said: “Nurses watch Theodore overnight so we can sleep but if they can’t make it we need to stay awake by his side in case he stops breathing.
“We’ve been his round-the-clock carers for a year now and we live in fear of the day we can’t resuscitate him.”
He said support from Chas has “made a real difference” to the couple’s lives as well as those of Theodore and his brother Isaac.
The family visits Robin House hospice in Balloch, which feels like a “mini holiday”, and benefits from Chas’s care at home service.
Miss Wingate said: “It’s definitely helped massively, having someone there to give us a hand and make sure we’re getting what we’re entitled to and help with things we couldn’t really do before.”
She added: “This will allow us the freedom of being able to go out without always having to take Theodore and all his equipment with us and ensure he has his feeds at the appropriate times.”
Supporting families
Chas‘s Family Income Maximisation Service provides crucial advice for families who who are struggling to afford regular hospital transport or suffering from food poverty.
Officer for the service, Monica Currie, said it has helped over 300 families and unlocked nearly £400,000 in much needed funds in the last three years.
She said: “The cost of living crisis has resulted in many of the families we support facing some of the worst financial difficulties they have ever experienced.
“The rising cost of fuel is also affecting the families we support who often have to make multiple trips to appointments every week.
“We are also witnessing a lot more food poverty among families due to the rising cost of inflation and this is something that is impacting bereaved families too.
“Many don’t have a choice in whether or not they can turn the heating off as their home needs to be a set temperature for their child’s comfort.”
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