The newly created Our Children’s Health campaign has called on the Government to amend the Health Act of 1970 so that any child diagnosed with a serious illness or congenital condition is automatically entitled to a full Medical Card.
Kevin Shortall, who set up the campaign with his brother-in-law Peter Fitzpatrick, is the father of 9-year-old Louise who was diagnosed with leukaemia two years ago.
“For the last two years we have not only been fighting childhood cancer but we have been fighting the HSE to secure a medical card for our seriously ill daughter,” said Mr Shortall. “The law is problematic, it’s what is hurting families.”
In recent weeks the campaign has received countless emails from parents around Ireland recounting the "heartbreaking and infuriating" stories of dealing with the costs of their child's illness.
Jackie Connolly, who attended the launch of the campaign, says she’s very worried about the long-term costs of looking after her daughter’s medical needs. Katie (6) has Down Syndrome, juvenile arthritis, chronic asthma and a heart condition.
“It shouldn’t matter how much money a person makes because at the end of the day you have a child with a disability or a long term-condition,” she said. “That’s enough to be worried about.”
Mr Shortall argues that the current health policy of granting “discretionary” medical cards on the basis of “undue hardship” often results in cards being denied or withdrawn from children with very serious illnesses and debilitating congenital conditions.
“We’ve heard too many accounts from exasperated parents as they struggled to obtain and retain a medical card for their child while trying to cope with the reality of the child’s illness or condition,” said Peter Fitzpatrick, Mr Shortall’s brother-in-law.“Our sick children are in need.”
Mr Fitzpatrick highlighted that the parents of these children have become “invisible” and are “stuck in a channel between home and hospital.”
“They do not have the time or the emotional reserve to continue to fight,” he said. “We are here to give them a voice.”
The campaign has set up an online petition calling on the Government to adopt the necessary policy changes to ensure full eligibility of health services for seriously ill children. They also plan to send letters to members of the Oireachtas urging all political parties to adopt the changes as soon as possible so as not to cause any further distress to parents.
A spokeswoman for the Department of Health has said that at the request of James Reilly, the HSE is currently examining how individuals who are not entitled to a medical card can still receive services that meet their needs.
See ourchildrenshealth.ie for more details.
