Spotlight on SEND: Cumbria mum suffering burnout in battle for neurodiverse daughter's education

• By ITV Border reporter Katie Templeton-Knight

A mum from South Cumbria says she is suffering from burnout as she battles to educate her neurodiverse daughter in a system where "she doesn't fit anywhere".

Rebecca Mcilgorm is among parents of children and young people with Special Educational Needs and Disabilities (SEND) who say there needs to be more funding in Cumbria for the educational system.

It comes as a poll for ITV News Regions and Nations, carried out by Opinium, revealed that over half of children with SEND have had to spend time out of school because their needs could not be met.

ITV News Border have also obtained figures showing that in Cumbria the number of appeals lodged against councils over improper SEND provision rose by 26% between 2021 to 2023.

Rebecca, from South Cumbria, has two children with special educational needs. Her 10-year-old daughter Vivienne is neurodiverse and is currently homeschooled after leaving mainstream school last year.

She told ITV Border that a key part of her decision to homeschool was because of her difficulties in finding the right educational setting for Vivienne.

This is because her needs cannot be met in either a special school or mainstream education.

She said “There's going to be some children that don't really fit in anywhere at the moment. That's how it is with Vivienne. She doesn't fit anywhere. So she's kind of just lost.

“I could send her to mainstream [school], but it damaged her mental health. Personally, my child's mental health is more important."

Rebecca applied to the local council for an Education, Health and Care plan (EHCP), which outlines the extra support a child or young person needs.

However, she said that Vivienne’s mainstream school often was not able to provide the care she needed due to a lack of resources.

She told ITV Border that Vivienne needed to be able to leave the classroom every half an hour to allow her to have time to move around.

However, Rebecca said that this was not implemented often as teachers were needed to supervise other children in the class.

As a result of this, she said, Vivienne would come home and have meltdowns.

“Teachers are doing a brilliant job in a very difficult circumstance," she continued. "I think [they] would have liked to have provided more for her, but there just weren't the resources there.”

Rebecca is no longer able to work due to the demands of homeschooling. She said she has dealt with poor mental health because of the pressure she is under.

“Parents are struggling as it is with having to deal with a neurodiverse child, because however much we love our children, it's a challenge," she explained.

“Then if you are having to fight for provision and fight to get your child [to get] diagnosed, it’s exhausting.

"I suffer with burnout because of it. Parents shouldn't have to battle to just get the children's needs met.”

Alternative provision

One option for children whose needs cannot be met be either a special school or mainstream education is alternative provision.

This is often funded either by a mainstream school or the local authority.

The Educla centre in Carlisle said that what makes it different from mainstream education is their focus on “social, emotional and mental health needs”.

On its website, it says it offers "in school support for children and young people who are struggling in the classroom or lacking in confidence".

Holly Fenton, centre manager at the Rockliffe site in Carlisle, said demand for its services is increasing.

Families like Vivienne’s say there needs to be more centres like this across the county.

Joe Kingswood, 17, and his mum Lisa Kingswood, from Penrith, have seen the benefits of alternative provision first-hand.

Joe is autistic and he started to struggle with his mental health while in mainstream education.

Eventually he became so unhappy he attempted to take his own life.

Joe now says that he is much happier and alongside studying, he works as a lifeguard.

He told ITV Border: “I wouldn’t be where I am now without [alternative provision]. To be honest, I could have been in some gang and I could have been dead. I could have been anything.

“But I definitely feel like they saved me and they taught me the most important skill which was how to be open about my autism and how to help other people to understand because that is the real problem, that people just don't understand.”

His mum Lisa now works in alternative provision and is passionate about the effect that it has had on her’s and her son’s life.

'Being a SEND parent, everything is a battle'

She says there needs to be more provision in Cumbria to help other families like hers.

“It feels very hopeless at times," said Lisa. "It feels very lonely at times. Being a SEND parent, everything is a battle. You are always fighting for your child, fighting to be heard.

“Schools don't see what parents see at home. So they don't believe what you're saying. There is help out there. You just have to be lucky to find it and that's it. You shouldn’t have to be lucky.”

Cumberland Council said it has recently approved a new alternative provision school to be built in the Carlisle area.

In a statement, it also said that it is “aware of the issues faced both locally and nationally by children and young people with SEND and their families, especially in relation to navigating an overcomplicated and complex national system”.

The authority added: “We would like to reassure families that we recognise and share their frustrations, and work is underway to improve our offer and services across Cumberland at pace.”

Meanwhile, a Westmorland and Furness Council spokesperson, said: “We are fully committed to continuing the work Cumbria County council had started on the improvement of SEND provision. This includes a review of the provision for special schools and specialist services.

“We’re very pleased our application to the Department for Education was successful and that our area will now receive a new Free Special school.

"The new school means there’ll be a sizeable and well-needed increase in the number of special school places for children and young people with SEND in Westmorland and Furness and we’re really looking forward to seeing this project through to completion.”

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