Up to half of all children and teenagers referred to mental health, learning disability and autism services in the run-up to the pandemic were left without proper support, with parents telling the Observer of children waiting years for treatment and a seven-year-old girl denied support as she was not suicidal.

Data published by NHS Digital shows that in 2019-20 – the most recent figures available – 23% of the 547,590 under-18s referred to NHS mental health, learning disability and autism services had no contact from health workers to deliver care, nor meetings between health workers to support their care. Another 26% – 144,384 people – had their referrals closed without receiving treatment. Some were told they needed social care instead, or passed on to charities, with others simply refused care as local services lacked sufficient capacity.

Parents have told the Observer of NHS child and adolescent mental health services (CAMHS) rejecting multiple referrals for the same child.

Emily Pringle’s seven-year-old daughter has had referrals for anxiety and mental health issues rejected by CAMHS over the last three years, plus three autism referrals that were rejected in the space of six months.

Even when a private doctor diagnosed her daughter with autism, the NHS community paediatrics team at first rejected the diagnosis; having eventually accepted it, they discharged her with no further help as she was physically well and reported to have support plans in place in school.

Her daughter’s anxiety has worsened to the point where she can’t leave the house and stopped eating for three days during May half-term. “You phone the emergency CAMHS number and I got asked if she was suicidal,” she told the Observer. “And I said ‘well, no, she’s seven’. ‘Has she got access to razor blades?’ I said ‘no, she’s seven! She’s with me’. ‘Sorry, we can’t help you’. And that’s what you get.”

“It’s horrendous, it’s absolutely horrendous and for a parent – she’s seven and she is begging me for help, ‘mummy please help me, I can’t cope any more’.”

In March, she was given an “urgent referral” for a CAMHS mental health assessment, but the waiting time for her is now at least eight months.

Last week, Pringle posted on Facebook asking for people’s experiences of CAMHS and got 500 responses within a day. Parents described years of waiting for help, with many saying CAMHS refused to help unless their child was suicidal.

Others couldn’t even get help after their child had self-harmed or attempted suicide. One parent wrote: “Suicide attempts and self-harm. Five referrals and five rejections by CAMHS.” Another’s son had had seven referrals refused, despite self-harm and attempted suicide, on the basis that “it’s his autism”. When his mother finally got an appointment she was told to Google “medication for under-18s” and speak to their paediatrician.

The pandemic has seen a rise in demand for young people’s mental health services. It was revealed last week that referrals rose by a third in 2020-21 compared to 2019-20.

Mental health minister Nadine Dorries recently tweeted that “we lead the world in the delivery of [mental health] services” and “we are not in the middle of a MH crisis” after a deluge of parents described their negative experiences of CAMHS.

But Liz Kalverda told the Observer that her son was now three years behind in reading and writing at school after waiting two years from being referred to CAMHS to getting an autism diagnosis, followed by another two years waiting for an ADHD diagnosis. He is now on a waiting list for occupational therapy.

“He’s lost a lot of friends because he’s different and he’s not understood why and no-one really understands him,” she said. “He’s struggled. He’s really struggled with the reading and the writing.”

“You just go from one hurdle to a waiting list, and then you get to the end of that waiting list, jump the hurdle and then land on another waiting list,” said Philippa McCann, who had to wait three-and-a-half years for her eight-year-old daughter to get an autism diagnosis, while she won’t see a CAMHS keyworker until August, 14 months after her referral.

The Department of Health and Social Care did not respond to a request for comment.