NHS Lothian audiology: Boy missed out on vital help because doctors took three years to accept he was deaf

Mother was told she was ‘neurotic’ when she pressed for diagnosis

Nine-year-old Jamie Farquhar was born deaf – but it took doctors in NHS Lothian three years to recognise it and in that time he missed out on vital support for him and his family.

His mother Carrie-Ann repeatedly pressed for a diagnosis, but she was called "neurotic" when she voiced concerns about Jamie not responding to loud noises. And she was told time and time again there was nothing wrong. But her persistence eventually resulted in Jamie being diagnosed as "moderately or profoundly deaf".

Jamie is just one of many children failed by NHS Lothian's audiology department. In December 2021, NHS Lothian apologised after an independent audit revealed repeated failings in children's audiology between 2009 and 2018, with many children diagnosed too late to be offered treatment which could have made a big difference to their lives. But Jamie was not one of the 155 children identified in that audit, giving rise to fears that even more young people have also been affected.

Carrie-Ann Farquhar with son Jamie, who lost out on vital help because doctors took three years to acknowledge he was deaf.

Now MSPs from across the political spectrum have called for action to ensure all those involved get the support they need. A debate in the Scottish Parliament led by Lothian Tory MSP Jeremy Balfour heard several MSPs from the region tell the stories of people in their constituencies who had suffered as a result of late diagnosis.

When Jamie was born he failed his hearing tests. Carrie-Ann said: "They brought him back to be retested and he failed those tests as well. Then they brought him back again six months later and I was told at that point he passed – that's when he was eight months old. It was only as he started to develop that I noticed he wasn't responding to any loud noise or his name."

She allowed time for Jamie to develop and in the meantime he managed to work out his own form of lip reading to get by. But when Carrie-Ann raised concerns about Jamie's hearing, her fears were dismissed. "I was told I was a neurotic first-time parent or that maybe Jamie had learning difficulties.”

Jamie was three before doctors acknowledged he was deaf and it was another six months before his hearing aid was fitted. "I feel we've been badly failed by the audiology department," said Carrie-Ann, a teacher from West Calder. An early diagnosis would have brought learning support for Jamie and also the family. "When children are born deaf, they are assigned a teacher of the deaf immediately, that doesn’t just kick in when they go to school, so we would have had a teacher of the deaf with us from birth, but we had nothing at all until Jamie was nearly four. And it would have helped us as well because we were in the unknown.”

And the delays continue. Jamie is meant to be seen every six months at the Sick Kids hospital in Edinburgh. "He's supposed to have six-monthly reviews, and he was due to be seen in November 2022, but he has still not been seen and when I checked the other day I was told he was about 300 on the list, so it'll be potentially another six months, which means it'll be a year and a half since his last review when it's supposed to be six months."

Jamie is now in P4 and about to move into P5. "The school says he's doing very well, but my issue is how much further could he be, had he been supported when he should have been. The first three years of his life are the main time for language acquisition and he missed those three years. He plays catch-up everyday."

At the Holyrood debate, public health minister Jenni Minto agreed to meet a cross-party group of MSPs concerned about the issue. She said she recognised the seriousness of the failings around NHS Lothian’s paediatric audiology services, as outlined in the 2021 report. “The report showed unacceptable levels of failure, as a result of which a number of children and young people and their families have endured lasting impacts on their lives. I have no doubt that those affected by the situation in NHS Lothian are anxious and rightly angry about what has happened.”