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How Britain's NHS helped this little boy when our own HSE refused

A DUBLIN family have slammed the HSE for refusing to sanction their four-year-old son's visit to a renowned Hunter Syndrome specialist.

Howard Swaine and Sharon Byrne found out the HSE would not fund their son Karl's examination by the UK consultant just as they were preparing to travel to England for the appointment.

The couple had paid for their travel and accommodation, confident that Karl fulfilled the HSE's criteria. But then they were given the news that the organisation would not pay for the consultation.

Sharon -- whose brother died from the condition aged 11 -- said today she was devastated by the response as the family had pinned their hopes on the visit to Professor Ed Wraith of Manchester Children's Hospital.

"We were sick and devastated because we were waiting and waiting to hear from them," she told the Herald.



desperation

"There is nobody with Prof Wraith's experience in Ireland," Sharon insisted.

Hunter Syndrome is an inherited disease in which long chains of sugar molecules (mucopolysaccharides or MPS) are not broken down correctly and build up in the body.

It is caused by a lack of an enzyme and can have mental and physical effects. Karl was diagnosed with the illness when he was two years old.

With the appointment approaching, the family could not get an answer from the HSE.

In desperation, they turned to Alison Wilson of the MPS Society, based in Belfast, who contacted the HSE on her behalf and was told the family's application had been turned down.

This was the Friday before they were to travel to Manchester.

Labour TD Robert Dowds, who had become involved in the family's plight, told the Herald: "I just thought the whole treatment of Sharon was terrible. The worse thing was that they didn't say until the last minute (that the applications had been turned down). We would have known where we stood if they had told us earlier.

"At all times, they [the HSE] were as unhelpful as they could be in relation to this issue," Mr Dowds added.

A HSE spokeswoman told the Herald: "The Treatment Abroad Scheme evaluates all completed applications in an equitable manner in accordance with the guidelines for the scheme. The HSE and the Treatment Abroad Scheme cannot comment on any individual cases."

It is understood that, as far as the HSE was concerned, the family's application came under the category of a request for a second opinion.

"They were looking for a second opinion and it's just not covered by the Treatment Abroad Scheme," a HSE source said.

In the end, Sharon emailed Prof Wraith. Amazingly, the medic came to an agreement with her which meant he saw Karl and gave the family his prognosis. "Only through the kindness of the NHS was Karl able to see Prof Wraith," Howard said.

And the news was good. "Prof Wraith reckons Karl has a mild form of Hunter Syndrome. It was hearing it from the horse's mouth that Karl is doing really well," Howard added.

"We walked away on cloud nine. We were so happy and so relieved that we knew he had a future," he said.

comurphy@herald.ie


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