Louie Lee is seven years old. He has been waiting years for a diagnosis of his special educational needs and behavioural issues. As a result he has never spent a whole day at school, cannot read or write and can only count as far as 20.
His mother Michelle Cassemis said she has desperately been trying to get help since he started nursery but her son as been “let down by the system”. He only got a statement of special educational needs last year when he was six, years after it was apparent to his teachers and his mother that something was wrong.
The single mother-of-three from Trowbridge, Cardiff, said Louie’s former school St John Lloyd Primary helped him get the statement of special educational needs. She said she had “nothing but praise” for the staff there but he couldn’t cope and she took him out altogether in July 2021. Since then Louie has stayed at home meaning she cannot return to work as a hairdresser.
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Without a diagnosis, no suitable school can apparently be found for her son, Michelle said. She is “heartbroken” that her youngest child has no school friends and has been effectively denied the help he needs. Michelle’s older children aged 17 and 19 had no problems at school and went to the same primary. She said long delays in helping children like Louie meant they could not have him in for a full day because he has so many behavioural and anxiety problems.
“When Louie started in reception he stayed at school for 90 minutes a day, then it went down to 60 and then 30. He was on a very reduced timetable for years,” she said. “He did not get a statement of special educational needs until he was six and we are still waiting to see someone for a diagnosis to see what is wrong.
“He has been sent a private tutor at home but that didn’t work either. I have been told so many things he might have, but he has had no diagnosis. I have been told he seems to have autism or ADHD. We have been back and forth to the doctors for three years. The headteacher of his school was amazing. I can’t say a bad word about her, but she was in a position where it was not possible to keep Louie in school. It became pointless sending him in. He didn’t want to leave the house and has attachment issues. I was struggling to get him in to school. Then after all that he was only in for half an hour. It wasn’t worth the chaos and battle.”
Michelle said the school got Louie one to one help but he couldn’t build a relationship and that failed too: “I have been told so many things but Louie has lost so much. He can’t read or write and has never had any school life at all. He’s not played in the school yard or joined in with PE.”
Michelle said everything got worse during lockdown because her little boy became so agitated there was a period where she could not leave the house with him for several weeks: “I am heartbroken that all his life we have not got more for him. I have done parenting programmes and done everything that was suggested. I feel Louie has been let down by the system and no one has any answers. I can’t work because Louie needs looking after. He gets angry, he struggles to share and suffers from anxiety and attachment issues and doesn’t sleep well. I just want some help and someone to listen I am beginning to get so worked up and hurt and there is so much emotion.”
Michelle said her older children, Hollie, 17, and Michael, 19, are supportive and “brilliant” with their little brother. Both her older children went through school with no problems. Hollie is now studying at Cardiff and Vale College and Michael works in retail. She said: “Louie has a good relationship with his brother and sister. My older children are brilliant with him but it’s hard for them to deal with too. Dealing with this was all new to me. We just need some help. It’s been so long.”
Cardiff and Vale University Health Board said it was sorry for the long delays in referral that Louie has had. A spokesperson said: “We apologise to Louie and his family for the delays experienced in exploring a diagnosis. The diagnostic process for neurodevelopment is complex and waiting times for access into services is not where we would wish.
“We are working hard to improve this. This includes making changes to the way services are organised based on consultation with a variety of health professionals with expertise in this area and continuing to explore opportunities to increase capacity. Our teams are also working closely with parents and colleagues in the education sector to support the referral process and the collection of the information required by professionals to support diagnostics.”
Cardiff Council said a child’s needs don’t depend on diagnosis. A spokesperson said: “Cardiff Council’s education services will always endeavour to respond to a child’s needs and this is not dependent on a diagnostic process.
“Schools are supported to provide a series of provision to pupils and their families depending on their circumstances and individual needs. This includes providing specialist teaching advice and support, facilitating educational psychology assessment and advice, providing a bespoke wellbeing and nurturing approach to learning and where appropriate, the provision of tuition at home whilst a suitable placement is found.
“Ensuring that the individual needs of each child is met is our priority and work is undertaken with a multi-agency approach to find suitable and sustainable provision which allows the child to thrive and which works for both pupil and family.”
Neither of which helps Michelle know when or where Louie may be seen for a potential diagnosis or if and when he will get a place in a school or special school where his needs will be met, she said, adding: “I still feel that he’s been neglected by both the education board and NHS. It’s wrong how they’ve just left him. Does that mean now then they going to move a bit faster?”
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