The family of a 14-year-old boy with autism is planning to sue NHS Highland over their failure to diagnose his condition for nearly 10 years.
Despite exhibiting developmental issues at an early age, Kobe Sutherland was not diagnosed until he was 12.
His mother Sylvia MacKenzie has now spoken out about the family’s ordeal in the hope that other families don’t suffer in the same way.
Mrs MacKenzie, of Walker Crescent, Culloden, claims she was regularly told by health and education professionals that the problem was down to her parenting rather than her son’s condition.
Her son was eventually diagnosed under another health board in 2013.
Mrs MacKenzie, 47, who lives with her husband James McNaughton, 30, has since received a letter of apology from NHS Highland following a ruling by the Scottish Public Services Ombudsman.
Now, the couple’s solicitor, Cameron Fyfe, of Drummond Miller solicitors, Glasgow, has started a damages claim on their behalf and is awaiting a response from the health board.
Mrs MacKenzie said the lengthy ordeal drove her to “the lowest low that anyone could feel.”
She added: “It has had a massive impact on my family and I was questioning my own parenting a lot of the time.”
Mrs MacKenzie first reported concerns about her child when he was two-years-old and then again when he was four.
Community paediatricians carried out two formal assessments for autism, but no diagnosis was given,
For the next nine years, Kobe continued to exhibit developmental problems and was in contact with health professionals and social workers.
He regularly failed to attend school and was referred to a children’s reporter on several occasion. He remains one year behind in school.
Mrs MacKenzie then sought an independent psychologist’s assessment which concluded that NHS Highland had failed to conduct appropriate assessments up to that point.
In 2013, medics at Yorkhill Children’s Hospital in Glasgow finally diagnosed her son with autism.
Mrs MacKenzie said that an early diagnosis would have spared her son much of the misery he has endured – and given him the support he needed.
She added: “He must have had a terrible time at primary school when he was in the classroom without support staff sitting there with him.
“I was never properly listened to by professionals and was unhappy that there was a judgement made that I was not effectively parenting my child without adequate investigations into any of the home circumstances of my case. It may have been complex and hard to see but they were only spending an hour at a time with him. You can’t see autism in one hour.
“I am deeply concerned that there might be other children in the area and other families who are experiencing the same sort of responses to their difficulties as I did.”
NHS Highland declined to comment on the case.
‘A horrendous time’
Rhoda Grant MSP (Labour, Highlands and Islands) said the family had endured a “horrendous” time due to the difficulties in getting a diagnosis for Kobe.
She said: “What stands out with this case is that, surely given the level of intervention that was happening with the child and the level of concern raised because of missing school, how on earth did they not flag this up before.
“It just seems to me that all this can happen and still people don’t look at the diagnosis. We need better diagnostic services in the Highlands and we need better support for children and adults too. Early diagnosis is really important for young people to get their education right and they are up against it anyway.
“This family have clearly had a horrendous time of it. The more we highlight these problems the more chance we can help other families avoid the same situation.”
Ms MacKenzie made a complaint to NHS Highland but was unsatisfied with the response and contacted the Scottish Public Services Ombudsman (SPSO).
The SPSO report, published in May, found that although initial assessments were reasonable at the time, NHS Highland failed to arrange subsequent appropriate referrals or assessments to establish whether Kobe had autism.
The report also found that the board should have given her a second opinion when she asked for one.