'I lost two years of income when my son had to miss school'

Kirsti Hadley has campaigned for years to get an education, health and care plan for her 13-year-old son

Two years ago, Kirsti Hadley was a self-professed "workaholic" running a successful business, and working with international clients such as Google, Nike and Samsung.

However, the single mother says she has since been forced to give up her job to look after her son and is "only just holding on to my house by the skin of my teeth".

Her son, 13, has been diagnosed with autism, ADHD and OCD and he struggled to adapt with the transition from primary to secondary school.

Miss Hadley, from Brighton, said the lack of suitable provision for children with special educational needs and disabilities (Send) at her son's secondary school left her with no choice but to withdraw him from education.

Despite years of trying, she told the BBC she has been unable to get him an education, health and care plan (EHCP) - a legal document which requires councils to meet a child or young person's needs.

The time spent out of school rocked her son's confidence and left him feeling "broken".

The school has since set up a Family Forum “to support all students”, and its head teacher added all schools “are supporting a very high level of need with little resources”.

A spokesperson for Brighton & Hove City Council said it is "committed to working closely with families to provide local children with the most appropriate education and to identify any additional support".

While her son was absent from school, Miss Hadley was not able to work and she had to close her business, which she had run for 10 years.

'Downward spiral'

At the same time that her finances began to dwindle, Miss Hadley began to struggle with her mental health.

"The downward spiral is so swift that it sort of gives you whiplash," said the 51-year-old.

It means Miss Hadley - who described her business as "my second baby" - now relies on benefits to support her family and pay her mortgage.

"I feel like I shouldn’t have been in that position of dipping into the public purse."

Miss Hadley's son has started back at school this term - and she hopes to return to work soon - but she added "there needs to be a solution" for parents of children with Send across the UK.

"It’s horrific," she said.

Miss Hadley spoke about her experiences in front of a live Woman's Hour audience on Wednesday, where experts, parents and children themselves were invited to talk about Send provision in schools across the UK.

A survey by the BBC Radio 4 programme, carried out by Opinium, suggested 73% of mothers think the various Send systems in England, Wales, Scotland and Northern Ireland are broken.

And almost 60% of mothers surveyed said they have given up work or cut back their hours.

School standards minister Catherine McKinnell told Woman's Hour that the government wants to "put education back at the heart of national life".

"By doing that, we get education right for everybody and we get the best for every child," she said.

Some parents told BBC News about their better experiences.

Nigel Stansbie, from Burnopfield in County Durham, said he accepted that there might be problems elsewhere, but that his own family’s experience was “hugely positive”.

His eight-year-old son, who has Down’s syndrome, is in Year 4, and has received lots of education support from the local authority since he was born.

"We have constant communication with them - he’s had a one-to-one from day one," he told BBC Radio 5 Live.

"We’re not in a particularly wealthy part of the country up in County Durham, but the school have actually managed to fund [his additional needs] without an EHCP."

'I should be sitting my A-levels right now'

On the other hand, 17-year-old Katie Nellist - who is autistic - told Woman's Hour the school system "completely ruined" her life.

At primary school, before she was diagnosed, Katie started to “really struggle” with the “pressure” of Year 6 exams.

She says the school leadership did try to help her, but that she did not receive the support she needed – and has since been diagnosed with post-traumatic stress disorder, which she says has been linked to her time there.

Katie Nellist (centre) and her parents have previously been involved in local campaigns for Send provision

Katie’s primary school said it “always worked hard to reduce the pressure on our children” sitting exams and it “fully supported” her decision not to take Sats.

The head teacher added the school remains “proud” of Katie and “how she is acting as such an amazing advocate for young people with Send”.

Katie later struggled to cope with the “overwhelming, and loud, and busy” environment of secondary school. Although she says the school was supportive, she "crashed out completely" with a mental health crisis, after three months.

She then tried to find a place at a specialist school for children with Send - only to be told by the council that all the suitable locations were full.

An Oxfordshire County Council spokesperson said it is unable to comment on individual cases.

"Fighting every step is so hard," said Katie.

She added that the county council – which is responsible for making sure children in the area receive appropriate education – was “failing” to help her.

Katie tried a couple of other alternative schools, which “didn’t work out” either, and has now been given an EHCP specifying that she should continue her education outside school.

Although she is now learning to be a horse-riding instructor, she wishes she was still in school.

"I should be sitting my A-levels right now but I'm not," she said.

"That is not good enough because I know that I am smart and I would like to learn."