HSE must pay for boy’s limb-lengthening treatment

The Ombudsman for Children Emily Logan who has told the HSE to provide travel and subsistence to the family in accordance with a written agreement dating from 2009. Photograph: Eric Luke/The Irish Times

The Ombudsman for Children has ordered the Health Service Executive to honour a funding agreement with the parents of a seven-year-old boy for limb-lengthening treatment in the US.

Ombudsman Emily Logan has told the HSE to provide travel and subsistence to the family in accordance with a written agreement dating from 2009, or to provide alternative arrangements which are no less advantageous to the boys medical treatment and clinical outcome.

The HSE had argued that the familys expenses were not covered by the Treatment Abroad Scheme because this only related to other EU states and did not cover medical treatment in the US. It had also argued that the approval of the original agreement was an unauthorised administrative error which it must be allowed to correct.

Ms Logan has also directed that any future treatments the boy may need should be considered by the HSE in the context of the established arrangements in place.

The HSE has undertaken to implement the ombudsmans findings, though a dispute over a claimed 5,000 overpayments in expenses remains to be clarified.

The family complained to the ombudsman in 2001 over the HSEs handling of their childs case. He was born with no left arm and abnormalities affecting his other limbs. These problems are being addressed through reconstructive surgery in the US which will eventually lengthen his legs and make them the same size.

The treatment is being funded by private insurance and the current case relates to travel and subsistence costs. While his case fell outside the Treatment Abroad Scheme, the HSE agreed on a discretionary basis to provide travel and subsistence in 2009. However, two years later after a review of the scheme, it decided that this funding would no longer be provided. The HSE pointed out that treatment was now available in the UK, but the parents said they did not wish to change their childs treatment arrangements.

According to the ombudsmans report published today, the withdrawal of funding is causing considerable distress as, the family says, it introduces uncertainty in relation to his ongoing treatment.

Following the treatment so far provided, the boys quality of life has improved and his parents say he can participate in normal activities for his age such as cycling and karate.

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HSE must pay for boy’s limb-lengthening treatment