A coalition of 13 leading charities is calling for the establishment of a dedicated fund for Northern Ireland to help families cover the hidden and "often insurmountable" costs of having a child in hospital.
At an event at Stormont on Monday, attended by local families and MLAs, the NICHC launched independent research outlining the hidden cost of having a child in hospital to demonstrate the additional financial costs parents and caregivers face.
The findings show that families experienced substantial financial burdens, incurring average costs of £351.96 per day. These include travel costs, parking, overnight accommodation, as well as daily living expenses and an average daily loss of earnings of £109.57.
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Rebecca Collings lives in Lurgan with her husband and four children. Their three-year-old daughter Carys has Spina Bifida, Hydrocephalus, Chiari ll Malformation and Bilateral Talipes.
The child spent the first three months of her life in hospital and has undergone 13 operations. She is currently waiting on her 14 th operation and attends at least two outpatient appointments a week.
Rebecca who was a full time teacher said the financial impact of having a child in hospital caused significant strain on their family, despite support from Family Fund.
"The impact of Carys’ diagnosis was devastating for her and for our family," she added.
"As well as supporting our little daughter through multiple operations and treatment, I had to reduce my full-time work to part-time. The range of hidden costs associated with supporting a very ill child - including loss of earnings, travel, sustenance, parking - can be hundreds of pounds a week and there is little direct government support. Although the benefits system can provide some support, it can be too little too late."
Of the 398 respondents surveyed, 17% reported having to give up work to look after their child whilst in hospital. A further 16% had to take a temporary unpaid leave of absence.
More than 22% of respondents had to borrow money from family or friends with over 15% reporting incurring debt as a result of their child’s hospitalisation. The research ultimately found that this additional stress created further damaging effects on the physical and mental health of parents and caregivers.
The Hidden Costs of Having a Child in Hospital in Northern Ireland research was conducted by Professor Victoria Simms, Professor of Developmental Psychology at Ulster University and Professor Nicola Doherty, Consultant Clinical Psychologist.
Professor Simms said families who have children who experience inpatient care "face numerous difficulties, and these are often hidden".
"Our research with the Children's Health Coalition has helped uncover the substantial financial and psychological impact of having a child in hospital. These data were collected prior to the cost-of-living crisis- so we can only imagine that the issues are even more stark. Families call for better financial and psychological support to ensure the best outcomes for their children."
The Northern Ireland Children’s Health Coalition is calling for direct financial support through the establishment of a £4 million Young Patients Fund for Northern Ireland, a non-means tested grant of £500, available to families as a one off payment once per year to help them cope with the additional costs.
The grant would be available to families who are resident in Northern Ireland but will cover hospitalisations across the UK and Ireland
Speaking on behalf of the NICHC Joanne McCallister, Chief Executive of the Children’s Heartbeat Trust said: “Families of children in Northern Ireland who have required hospitalisation for illness, especially those born prematurely or with chronic conditions and those who develop serious illness later, have always suffered hidden financial costs, this isn’t new.
"But we now have the first research to evidence this and the findings show that the cost is now at a crippling level, especially given the current economic climate.
"In 2021, Scotland introduced a Young Patients Family Fund where caregivers of children who require hospital stays can access financial support to help with the additional costs of travel and food etc.
"Today, we call for the same support and urge the creation of the Young Patients Fund for Northern Ireland because no family should be forced into debt because their child needs hospital treatment."
Alliance MLA Sorcha Eastwood said the costs for parents and family visiting children in hospital "is prohibitive and shouldn't even be something that should have to be considered".
"Hearing Adam's Army speak this morning, it really brings it home when the most precious person in your life is fighting for their life, finance and money shouldn't even come into it, but it does and it is an utterly disgrace that it should even come to that.
"But too many families have been impacted by this. I fully support this work by Cancer Fund For Children & NI Children's Health Coalition and that support is needed for families."
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