HSE must pay for boy’s limb-lengthening treatment

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 boy's medical treatment and clinical outcome.

The HSE had argued that the family’s 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 ombudsman’s 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 HSE’s handling of their child’s 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 child’s treatment arrangements.

According to the ombudsman’s 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 boy’s quality of life has improved and his parents say he can participate in normal activities for his age such as cycling and karate.

“They believe that if the child does not complete this treatment it will be life-limiting for him, that he would not be walking without the treatment and he needs the treatment to continue to walk,” the report states.

“It is clear that he is progressing under the benefits being provided by this treatment. In the meeting with the child, he expressed his understanding of the meaning of the treatment for him stating that without these operations ‘I will be in a wheelchair until I am dead’.”

The ombudsman found the HSE’s actions in resiling from the approval given in 2009 was based on “undesirable administrative practice” and was contrary to fair and sound administration.

The withdrawal of funding in the middle of the treatment programme would cause the treatment to be stopped because the family could not afford the costs involved for subsistence while the boy remained in the US for months after each operation.

Ms Logan ruled that the HSE placed at risk an established course of medical treatment and this resulted in stress for the family.