NI health: Parents of sick children call for help with costs

David and Sara Watson with their late son Adam, who died in August 2022 after almost three years of illness

Financial support for families with a child in hospital would help them cope with cost such as transport and food, two parents have said.

The Northern Ireland Children's Health Coalition has called for a a £4m fund to give families a grant of £500 a year.

David and Sara Watson said that money would have made a difference to them.

Their son Adam was diagnosed with acute myeloid leukaemia in October 2019 when he was seven.

He died on 3 August 2022.

His parents were living on one wage for many months with a sick child and many parents in similar situations also face costs such as food, drink, fuel, parking, overnight accommodation and childcare.

"You are starting 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,'" said Mr Watson.

"Money does not come into it when you have a sick child but you still need money to survive.

"You need money to keep that child as comfortable as possible."

Mrs Watson said her family were fortunate that they had a great support network around them.

But she added: "No family wants to be known as a charity case, that you are having to rely on somebody dropping money round or you are having to rely on family.

"You feel like you owe it to try and go back to work to show that you are not in this to try and rip people off.

"You are trying your hardest. You are trying to get your child better, keep a roof over your head, trying to live and trying to work and it just builds up."

David Watson pictured with his son Adam in hospital while the child was being treated for leukaemia

Mrs Watson said Adam was aware of the cost-of-living crisis and was watching the news when it talked about people having to make a choice between feeding their family or heating their homes.

She said he asked her: "Mummy, do we have money to do both? Do we have money to do both because you and daddy cannot work at the minute because I'm sick?

"The money thing is one side of it but it is the mental impact that has on us and a child.

"To hear your son, whilst he is lying there fighting for his life, worrying about his mummy and daddy being able to pay the bills and heating the house."

Sara Watson at her son's hospital bedside

Prof Victoria Simms, an academic from Ulster University who carried out a study on the issue, said she found the data "quite shocking".

"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," she said.

The professor added that there was a "lack of awareness around the welfare state that they can access and have a right to access".

Instead, she said, the research found families were "going to their own parents to ask for income support because they do not want to necessarily access the welfare system".

"It just really hits home that these families are doing their best to support their little children and older children that are experiencing long term issues and we really need to support those families the best that we can," said Prof Simms.

Prof Victoria Simms said parents with children in hospital often rely on financial support from their families

The Northern Ireland Children's Health Coalition is calling for direct financial support for families who live in Northern Ireland and also cover hospitalisations across the UK and Ireland.

Its co-chairwoman Alison McNulty said that money would help reduce the anxiety families have to bear because of the physical, mental, and practical impact of having a child in hospital.

"We are putting our parents in very difficult financial situations because they have a very ill child and those children could be in hospital for weeks, months or often a number of times over a given year," she said.

"It will help them with petrol, staying overnight when they have a very sick child, feeding themselves when their child is in hospital and it will go a long way to alleviate some of that stress and anxiety that many of our parents are under."

Ms McNulty said implementing such a fund would be easy as there was already a mechanism in place for rolling it out - it just needs the Northern Ireland Executive to vote for funding to be put into place.

"I understand that there are pressures on government at the moment but we cannot let a group of our citizens here in Northern Ireland go without support, to fall between the cracks, because they and their children are suffering when such a fund could make a huge difference," she said.

Adam Watson's parents said he was worried about their lack of income while he was in hospital

Adam's parents agree that a fund is needed.

"No family should ever fall into debt because they have a sick child," said Mr Watson.

"It is a stress you do not need.

"You are not looking to make money because your child is sick, you are just looking to survive," he said.