Burnley and Ribble Valley children waiting years for an autism and/or ADHD diagnosis

Several parents have described the "difficult process" of seeking an assessment for their child.

Burnley mum-of-two Lauren Jane Hutchinson says she first noticed signs of her son’s neurodivergence when he was one but felt her health visitor didn't take her seriously.

Lauren highlighted it to his teachers when he started Reception class in primary school and a referral was made in Year 1.

Now aged nine, he has finally been diagnosed, first with ADHD last November and then with autism in January.

"We've been waiting five years," said Lauren.

"It was a relief when we got the diagnoses, it means we weren't going mad. But it changes nothing as you only have it in writing and the support isn’t there."

It was a different story for Daniel Connor, of Burnley, who says his four-year-old is set to be diagnosed this month.

The dad was able to flag concerns to a health visitor before his son’s two-year development check thanks to his experience managing a mental health home.

Daniel said: "We got the wheels in motion. We're privileged that we understand how it works, whereas if you don't, you wouldn't know where to start."

His son's nursery recommended Portage Lancashire, a home-visiting service for pre-school children with significant special educational needs and disabilities. Portage supports parents and carers at home, helping develop their child's play and learning.

"It's been brilliant. They pick things up, put the referral through, and advise you about how to improve communication and what the the next steps are," said Daniel, adding that Portage helped his son to communicate his needs and feelings.

Talking about the assessment process, he added: "The earlier you get in there, the better. As [children] get older, the harder it is to get into the system."

For some families, it took a huge change in their child's lives for their neurodivergence to become evident.

Burnley mum, Jane Gent, began noticing changes in her son Braeden's behaviour when he moved schools about four years ago.

"He was not coping in class, being sent home, getting suspended and excluded," said Jane.

"My husband and I both work full-time, and it was hard dropping everything [to pick him up] and not knowing who was going to look after him."

Braeden's school referred him for an ADHD assessment.

"I'd not heard of the SEND world, and I had no idea how long the waiting list would be," said Jane.

While the family awaited an assessment through The Rainbow Child Development Centre, Braeden continued to struggle at school and was being taught in the headteacher's office.

"The school was trying its best to support him but couldn't manage him and he couldn't manage in school," said Jane.

"I kept ringing the Rainbow Centre asking where we were with the referral...saying my child needs seeing sooner rather than later. We were eventually seen after a lot of begging and pleading from me and the school. He was put on treatment, diagnosed with ADHD, and got a temporary placement at The Heights."

Like with Jane and Braeden, Clitheroe mum Rachel Wilson spotted signs of 15-year-old Millie's ASD after a massive upheaval - the Covid-19 lockdown. She says Millie was staying in her room a bit more, struggling with changes in routine, and regularly lining items in a row.

Rachel approached Millie's school in Year 6, who thought she was dyslexic. Believing there was something more going on, the mum contacted the high school her daughter was set to go to, and they supported her in a referral for an autistic assessment when she started Year 7.

She was also put under the East Lancashire Child and Adolescent Services to support her with related mental health problems.

Rachel says the family waited two years for an appointment with a consultant. When Millie finally had an assessment, her neurodivergence was missed as she had learned to mask it when being observed by others.

Talking about Millie's autism, Rachel said: "She masks it massively. You'd look at her, and if you didn't know the symptoms, you wouldn't think she was [autistic]. I used to think she was looking at me directly but she was looking over my shoulder."

Her mum continued to advocate for her, and Millie was referred to a specialist, who diagnosed her with ASD, with Rachel adding: "From start to finish, it took two and a half years for a full diagnosis. It was a difficult process."

The Lancashire and South Cumbria NHS Foundation Trust works with partners like schools and the county council to support children with SEND according to the child’s requirements and specific circumstances.

Jane Munton-Davies, the Trust’s Chief Operating Officer, said: “The health and wellbeing of children is a priority for the Trust and we are sorry to hear of anyone who feels they have had a negative experience.

“We acknowledge that waiting times for access to our children and young people mental health services, which includes specialist Attention Deficit Hyperactivity Disorder and Autistic Spectrum Disorder, are longer than we would hope, which is largely due to demand. Sadly, diagnosing such conditions can also be complicated and take some time, which we appreciate then further extends waiting times for children and their families to get the clarity they are seeking.

“We are working closely with our commissioning partners to review current pathways, as well as autism assessments and interventions, and are working as a system to redesign our service models to better meet the needs of families across Lancashire and South Cumbria. We have also commissioned new partners to begin to work with us to create additional capacity, which will help to reduce waiting times.”

The Trust, Jane added, faces “workforce challenges” and is continuing to recruit into vacancies, find ways to retain staff, and train and equip new starters and existing employees to support children and young people.