According to research by the Northern Ireland Children's Health Coalition, families in Northern Ireland may incur additional expenses of about £350 per day when a child is hospitalized.
These expenses consist of refueling, parking, lodging for the night, childcare, and lost wages.
13 charities from Northern Ireland are a part of the coalition.
To assist families in meeting some of these expenses, it is urging the creation of a £4 million fund.
According to the coalition, this would provide families with an annual grant of £500 that is not means-tested.
Money like that, according to the parents David and Sara Watson, would have been significant.
In October 2019, when he was seven years old, their son Adam received a diagnosis of acute myeloid leukemia.
After 33 months of cancer treatment, Adam passed away on August 3, 2022.
For many months, his parents supported a sick child while only making one wage.
Mr. Watson observed, "You are beginning to count pennies and say, 'We need that amount of money for diesel to get us up and down to hospital for five days this week and we have that for food.'".
"Money does not factor in when a child is ill but you still need to make ends meet.
To keep that child as comfortable as possible, you need money. ".
A survey conducted by Ulster University and the Northern Ireland Children's Health Coalition included 269 caregivers who had a child in the hospital receiving care in the previous 18 months.
They reported experiencing significant financial hardships because their child needed inpatient care.
- To care for their child while in the hospital, 17% of parents quit their jobs.
- 16 percent of workers took a brief unpaid leave of absence.
- More than 22% took out loans from family or friends.
- The hospitalization of their child resulted in debt for more than 15% of parents.
According to the study, parents and caregivers' physical and mental health suffered further negative effects as a result of the additional stress.
Mrs. Watson praised the strong network of friends and family members that her family had.
She went on to say, however, that "no family wants to be known as a charity case, that you have to rely on someone dropping money off at your door or you have to rely on family.
You feel as though you have an obligation to try to return to work in order to demonstrate that you are not in it to take advantage of other people.
"You are making every effort. It just piles up as you struggle to live, to work, to keep a roof over your head, and to make your child better. ".
Adam was watching the news when it mentioned people having to choose between providing for their families' needs and keeping their homes warm, according to Mrs. Watson, who claimed Adam was aware of the cost of living crisis.
Because you and Daddy are currently unable to work due to my illness, he reportedly asked her: "Mummy, do we have money to do both?
"The financial aspect is only one aspect of it; the other is the psychological effect it has on us and a child.
To hear your son worrying about his parents' ability to pay the bills and heat the house while he is fighting for his life. ".
Professors from Ulster University conducted the study, which was titled Hidden Costs of Having a Child in Hospital in Northern Ireland.
Prof. Victoria Simms, one of them, stated that she found the data to be "quite shocking.".
According to her, "there is a disproportionate effect on family income and that is not good for the parents themselves, for their own self-esteem, for example, but also for the environment in which those children are going to grow up.".
The professor continued, "They lack awareness about the welfare state that they can access and have a right to access.".
As opposed to doing so, she claimed that families were "going to their own parents to ask for income support because they do not necessarily want to access the welfare system," according to the research.
"It just really sinks in that these families are doing their best to support their young children and older children who are dealing with long-term issues, and we really need to support those families the best that we can," said Prof. Simms.
In addition to covering hospitalizations in the UK and Ireland, the Northern Ireland Children's Health Coalition is requesting direct financial assistance for families who reside in Northern Ireland.
Money, according to its co-chairperson Alison McNulty, would help families cope with the anxiety they experience due to the emotional, psychological, and practical effects of having a child in the hospital.
She said: "We are putting our parents in very difficult financial situations because they have a very ill child and those children may be in the hospital for weeks, months, or frequently a number of times over a given year.".
It will go a long way toward easing some of the stress and anxiety that many of our parents are experiencing. It will assist them with paying for gas, staying over when they have a very sick child, and feeding themselves while their child is in the hospital. ".
According to Ms. McNulty, setting up such a fund would be simple because there is already a system in place for implementing it; all that is required is for the Northern Ireland Executive to approve funding.
I recognize that the government is under pressure right now, but we cannot let some of our fellow citizens in Northern Ireland fall through the cracks without assistance because they and their children are suffering and such a fund could make a significant difference, she said.
The fund is required, according to Adam's parents.
A sick child should never cause a family to go into debt, according to Mr. Watson.
"You don't need the stress.
Because your child is ill, you are only trying to survive, he said, not looking to make money.
