For nearly three years Ethan Matthews just wanted to play football with his friends and be like a “normal” boy.
Instead, he was in pain and facing a stressful wait, not knowing when he would have urgent surgery to remove his kidney.
Aged 11, Ethan, from Carmarthenshire, was told an infected abscess on his side had left him needing the operation – he did not get it until he was 14.
Now the ombudsman has criticised the “unacceptable delays” he faced.
Nick Bennett, the Public Services Ombudsman for Wales, said it was likely his human rights had been compromised “due to the impact on both his physical and mental wellbeing”.
His report said health officials had agreed to apologise and adopt recommendations.
For Ethan’s father, Robert, it is “vindication” after he complained to the watchdog after a stressful three years for the whole family.
“To see your child cry because he was in pain… it was very difficult to take,” he said. “There was nothing we could do.”
Ethan, from Burry Port, was told his left kidney had become non-functioning after scans at Glangwili General Hospital in Carmarthen in June 2014.
He was fitted with a tract in his side after suffering from a build up of fluid and visited his GP up to three times a week to have dressings changed prior to the surgery last year.
He was referred to a consultant at the University Hospital of Wales in Cardiff and put on an urgent waiting list for his kidney to be removed.
But despite constant calls to the hospital – including to the chief executive – an appointment never came.
Mr Matthews said his son, who is now 15, missed out on a normal childhood for nearly three years.
“We had to ban Ethan and stop him from taking part in any contact sport – no football, no rugby, even general horseplay out with his mates. He couldn’t do it.
“At one point he asked us whether he could join army cadets and we had to say “no, just in case. You can’t risk having an injury to your side” – especially being left with an open wound to his side for three years. The risk of infection was quite high.”
He said he was told the wound on Ethan’s side would not heal until his kidney was removed – and over the three years it constantly became infected.
“He spent two years taking antibiotics to combat the infection in his side all the time,” said Mr Matthews.
“We were taking him back and forth to the GP’s surgery to change the dressing and to monitor it every week.
“Ethan became frustrated. He would constantly be asking “when am I having my operation done”. It was very difficult to tell him “we don’t know”.
“You have got no idea when it’ going to get sorted, when it will get done.
“He did get upset on numerous occasions with his side and there was nothing you could do. The only thing he could have done was to have his operation and we couldn’t get it done.”
‘Overjoyed and relieved’
Eventually, after two and a half years of waiting, as well as getting his local assembly member involved, Mr Matthews spoke out about his son’s plight in the media – “it was the last resort”.
“Low and behold, the day after it was broadcast we had a date for his operation,” Mr Matthews added.
“We were so overjoyed and relieved he would finally get his operation.”
Ethan, who finally had the nine-hour kidney removal operation in May 2017, added: “It’s a really good feeling that I can actually live a normal life again, playing sports and going out with my friends.
The ombudsman’s report into the delay said Cardiff’s University Hospital of Wales did not tell the referring hospital that it could not meet treatment targets in this case, denying the opportunity for alternatives to be considered.
Mr Bennett said: “This is a shocking series of events where an 11-year-old child was unable to thrive for almost three years because of totally unacceptable delays.
“It has clearly been a dreadful experience for this young boy and his family and it is likely his human rights have been compromised due to the impact on both his physical and mental wellbeing, and the extent of suffering he has endured.”
His report said health officials have agreed to apologise and adopt recommendations.
Cardiff and Vale University Health Board said it wanted to convey its “sincere apologies” for the distress caused to Ethan and his family.
“We would welcome the opportunity to meet with the patient and their relatives to personally convey our apologies and to provide some assurance with regard to the much improved referral to treatment time performance and the ongoing monitoring of the waiting lists,” a spokesman added.
Hywel Dda health board has been asked to comment.