THE mother of a severely disabled boy who communicates solely through blinking is considering taking legal action against NHS Lothian after he was forced to miss months of school.
Adam Bojelian, 12, who suffers from cerebral palsy and is unable to walk, is a pupil at Forthview Primary and requires a nurse to accompany him at school due to his complex health problems.
However, Adam’s mother Zoe said her son has missed several months of school over the last six years because NHS Lothian had failed to provide a replacement nurse when his rota nurse was off sick or undergoing training.
The final straw came on Monday when she received an e-mail from NHS Lothian informing her that Adam’s designated nurse would be off sick next week and the following Monday, with no alternative cover provided, meaning he cannot attend school on these days.
Mrs Bojelian said school and learning was Adam’s “total life and passion”, adding: “Adam gets frustrated and upset when he can’t go because he absolutely loves school.”
Mrs Bojelian, who lives in the New Town with Adam and her husband Paul, has now set up a Facebook page titled “Let Adam Go to School”, which has already attracted more than 200 people.
She said: “I was promised by NHS Lothian staff that I would never be in the situation again where Adam going to school is dependant on one member of staff, and that there would always be a back-up plan. NHS Lothian has to get in place a system where they have a reliable pool of people who are trained up to go to school with Adam and any other children.”
The youngster, who is also blind and suffers from a number of serious health conditions including a severe seizure disorder, moved into mainstream education from the Royal Blind School in August last year as a result of his impressive academic performance.
Mrs Bojelian added: “It keeps happening, it’s not like it is a one-off and the odd day, it is a repeated thing. Often NHS Lothian says it will try to get a replacement nurse, but nothing happens. In 2008, we took the matter to the Scottish Public Services Ombudsman and NHS Lothian gave an undertaking that they would always provide a nurse for him.
“Adam will be going to high school soon and the consensus is he has the ability to do well academically, but he won’t be able to do that if he can’t get to school because he hasn’t got the nursing support.”
The primary six pupil’s only form of communication is through blinking, but despite the constraints, he likes writing poetry and has won awards for his work.
Mrs Bojelian, a part-time medical law PhD student, said: “We do not want to be taking legal action against a health authority, but when it’s literally been six years and Adam should be going to school when he’s not, it’s just not fair on him. It’s as if Adam’s education isn’t valued.”
Three nurses currently form part of the monthly rota for accompanying Adam at school.Nurse director at NHS Lothian, Melanie Hornett, said: “We work very closely with the families of children with complex care needs to ensure they receive the best possible care.
“There is a limited number of nurses who have the experience required to provide this care and it can be challenging to organise cover at short notice. However, we do all that we can to provide this service, including bringing in nurses from outside agencies.”