A severely disabled boy who needs help to write has penned a letter to the new head of NHS Lothian begging him to arrange the nursing cover that would let him go to school.
Adam Bojelian, 12, has cerebral palsy, is blind and suffers from a severe seizure disorder. He attends Forthview Primary but needs a nurse to accompany him.
The youngster has to miss school when NHS Lothian fails to provide cover for his regular nurses if they are away or attending training.
Adam was previously a pupil at the Royal Blind School before being moved into mainstream education last year because he was doing so well academically. He communicates by blinking, and can write if he is helped to hold a pen.
His mother, Zoe, said he had missed around half of this term because of the lack of nursing cover.
“This school term, he’s only got in 48 per cent of the time,” she said. “The problem seems to be that Lothian uses a nursing agency and they can’t fill the shifts, but they keep going back to the same agency.
“One of the things they say is that Adam’s needs are so complex it’s hard for them to find nurses who can care for him, but that doesn’t make sense because their nurses are looking after him when he’s critically ill and if he’s not in school, it’s me that’s looking after him and I’m not a nurse.
“I’m sure there are lots of nurses out there who would jump at the chance of a job where they didn’t have to work during the school holidays.
“It’s so sad for him when he can’t get in to school.”
Mrs Bojelian said the problem had been going on since 2006 and after missing more school this week, Adam decided to go straight to the top and write to NHS Lothian’s new interim chief executive, Tim Davison.
Mrs Bojelian said: “He said that he wanted to write the letter so, just like when he’s writing poetry, we discussed what he wanted to write and I helped hold the pen. He’s very determined as to what he wants to say.”
Adam and his mother then handed the letter in at the reception at NHS Lothian’s headquarters, Waverley Gate.
Melanie Hornett, nurse director at NHS Lothian, said: “I am sorry that Ms Bojelian still has concerns and have offered to meet with her again, on behalf of our new interim chief executive, to discuss these.”
However, she disputed Mrs Bojelian’s figures for her son’s attendance, saying: “We provide a comprehensive package of care for Adam which includes nurses to accompany him to school and our records show that, in the past year, 96 per cent of all shifts have been covered.”
Ms Hornett said Adam’s nurses were provided by an external agency at the Bojelians’ request and there were a limited number of nurses who chose to work in a community setting.