An investigation by the Office of the Children’s Ombudsman found that the seven-year-old, who has limb abnormalities including a right femur which will not grow normally and who also does not have a left arm, was “adversely affected” by the HSE’s change of view on funding previously granted to his family.
The HSE has decided to honour the terms of its original agreement with the family on the recommendation of the report.
The boy required extensive reconstructive surgery to his right hip and leg and, after a period of searching for limb-lengthening procedures in Ireland, Britain, France, Germany, and elsewhere, the family found two doctors who could carry out the operation, one in Russia and one in Baltimore in the US.
They chose the latter following advice from their health insurer and Dublin-based consultant.
The parents applied to the HSE in 2006 for funding for subsistence and travel to the US but it was rejected.
Following a review, funding was granted verbally and the HSE contacted the family’s US consultant before sending a letter in Feb 2009 to the parents, which the parents believed entitled them to costs covering treatment in May 2009 and surgery at 12 years and 16 years of age, as well as one review visit per year between those dates.
However, due to an infection which set in after the 2009 operation, the boy now needs additional surgery, meaning a total of five procedures are required rather than the initial four. The extra surgery was due to take place this year.
However, the HSE informed the boy’s parents in 2011 that their son was not entitled to funding under the Treatment Abroad Scheme as his treatment is being provided outside the EU/EEA.
The HSE also told them by phone in Apr 2011 that they owed €5,000 in costs which it said was not covered by the Treatment Abroad Scheme.
The parents rejected the HSE overpayment claim and said it must be a mistake. In Mar 2010 a HSE official told them shoe lifts were not now covered for their son.
The boy has had two surgeries completed, in 2006 and 2009, has attended for yearly review visits where costs have been covered, and three more surgeries are planned in 2013, 2016, and 2020.
The OCO probe found that a medical assessor in the HSE approved the treatment plan for the US in Oct 2006 and that a general manager, now retired, instructed his staff member to process this application under the TAS.
Other documents also leant weight to the parents’ view that a commitment to funding had been given.
The HSE admitted that there were was no system of appropriate recording in the TAS office at that time.
The OCO report found “that the HSE’s actions in resiling from the approvals given in 2009, for the provision of financial assistance to the parents to support the medical treatment of their child, are based on undesirable administrative practice and are contrary to fair and sound administration”.
In its findings, the OCO concluded that the HSE had ample time to go through its own processes to determine the application and that senior HSE personnel considered and approved the application.
The HSE said it would clarify the overpayments issue and the TAS will consider funding for travel and subsistence for any such unplanned treatments in accordance with this recommendation.