The Costs of Caring

Caring for a child with a life limiting condition is made even more stressful by the extra financial burdon, for some it means facing difficult choices about putting food on the table or funding care, accommodation and travel. Help is at hand from the Cliona’s Foundation.

The Crowe Family

For all of us COVID 19 has presented many challenges, missing family, home schooling, losing jobs, adapting to a new working environment and also sadly for some dealing with the death of a loved one. But for families of a seriously sick child who require long periods of stay in hospital, specialist care, treatment at home or travelling for treatment and appointments, the past 12 months has brought additional pressure to their already very stressful lives. Both parents may now be out of work, there are limits on hospital visits, overnight stays and available accommodation. Their network of support is limited and increased care is required to keep all of the family healthy.

The additional financial pressure this brings to bear on an already very stretched household budget is huge and highlights the issue of the non-medical costs of caring for a sick child. While the medical needs of a child will always get the best of treatment and care the non-medical costs or the “hidden costs” of caring for a sick child are substantial. They place a significant financial burden on families when the only focus for the family should be on getting their child better. 

Cliona’s Foundation is a national charity that for the past 14 years has been raising awareness of these costs but also supporting families to help alleviate some of the financial pressure.  Cliona’s has provided financial support to some 849 families all over the Country. It receives applications from families through many different routies including both Temple Street and Crumlin Children’s Hospital. The Jack & Jill Foundation and many other sick children and family support organisations also approach us. They provide invaluable support but do not provide direct financial support.  

Cliona’s was founded out of the very personal experience of Terry and Brendan Ring in memory of their daughter Cliona who died in 2006. She was just a month short of her 16th birthday.  Over a period of three days Cliona went from being a healthy seven year old to her parents being told she had an inoperable brain tumour. 

They started on an eight year journey of treatment for Cliona which culminated in four months in Cork University hospital with Cliona, in a coma. She she died in December 2006. 

“After losing Cliona, which is one of the hardest crosses that life can throw at you , we wanted to do something in memory of her short life.” said Brendan.” During our journey with Cliona, we were struck by the massive costs associated with caring for a sick child particularly over a long period. We knew first-hand what it was like to have the emotional and mental burden of caring for Cliona but how on earth can parents cope with the huge day to day expenses of caring for a loved one also. We were in the very lucky position of being able to carry the costs ourselves despite Terry having to give up her job. Many parents are not in the same position. And we met a lot of those parents on our journey. Parents who often had to choose between putting petrol in the car to travel for appointments or pay their rent or mortgage. For some that choice also involved whether they could afford to put food on the table. This is just heart breaking and should not be the case.”

Fundraising Supporters

A report published by Cliona’s in 2018, Too Dear to Visit, was followed by a further one in 2020 by Children in Hospital Ireland titled; In Childhood Illness, Financial Stress: The hidden costs of hospital care for children. Both starkly shone a light on the non-medical costs of having a sick child both in hospital and at home and  highlighted that for same parents the reality is they cannot afford to be by their child’s bedside in hospital . 

These are parents away from home for long periods of time while they care for their child. They have to pay for accommodation, food, transport. Some have to take time out of work, pay childminders to look after their other children while they are awa. Others end up having to fund the cost of specialised equipment and pay for additional home care for their sick child.  Not all families need support but there are many that are really struggling financially to deal with these additional costs. 

Non-medical expenses, particularly for parents outside Dublin who have  to travel to visit their child in hospital can run to as much as €160 a day. The estimated costs can run to an additional €10,000 per annum to care for a child with a life limiting illness. There are 4,000 children in Ireland with a life limiting condition, 400 of them will pass away this year and some 400 more children and their families will be faced with a devastating diagnosis.

A family from Wexford who availed of Cliona’s support revealed how important it was for them: “You will never know how much it meant to us being in Crumlin five and a half months with our son. It was bad enough him being so sick , but all the added expenses of just trying to maintain our home, along with living in Dublin and even just trying to have money for travelling up and down and eating was near impossible. The cheque we received was a godsend and came at the right time for us as we were at breaking point.”

Cliona’s Foundation believes no family should have to struggle financially while caring for their sick child, It is unique in that it focuses on providing support directly to families specifically for non-medical costs. The aim is to ease the financial burden on families caring for a child with a life-limiting condition.

If you want to know more about Cliona’s, seek their help or offer support go to clionas.ie  email info@clionas.ie or call 061331333

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