Children are being ‘lost in a broken system’ as parents claim they are waiting years for autism spectrum disorder diagnosis (ASD).

Dorset Clinical Commissioning Group (DCCG) has come under fire after parents and campaigners say the healthcare provider is repeatedly failing to meet their 52 week target for children referred for ASD assessment at Dorset County Hospital (DCH).

It has been revealed that between April 2015 and June 2018, DCCG did not breach their ASD target once.

However, between June and October 2018 there has been a total of 39 breaches.

In August, chief executive of DCH NHS Foundation Trust, Patricia Miller said the trust had just four 52-week breaches for ASD and the service across Dorset was in “urgent need of redesign”.

One parent told the Echo of her ‘living nightmare’ as, two years after referral, her five-year-old son still had no formal diagnosis.

“It has been very difficult as a family,” she said. “My son has become explosive and has very low self esteem.”

She added because her son did not have an ‘official diagnosis’ she was unable to access family support and, as his school was unable to get additional funding without formal diagnosis, he had lost one-to-one support in the classroom.

She said her son, who was diagnosed with special needs aged three, self-harmed when he was stressed by hitting his face and punching his eyes.

“I’ve been offered parenting courses in the mean time but my ability to parent is not going to stop him being autistic. I’m dealing with a child that is traumatised. There’s so much pressure for him to cope in a society he doesn’t understand. He hates his life. With the right support he will be a very productive member of the community but all I can do is tell him that I love him,” she said.

“My eldest son is continuously impacted by my other son’s behaviour. We come from a very positive family but we are completely suspended – we are completely lost in the system.”

Emma Stoodley, whose six-year-old daughter was referred for assessment in June, said she felt she had been “fobbed off from the very beginning.”

“I was told at the time there was a six to nine month wait but I’m now being told it’s nearer 18 months - but is that true?” she said. “By the time we get a diagnosis my daughter will be in crisis. She is already struggling at school – I have to drag her there kicking and screaming. It’s your child – you’re trying to do your best for them but without any help.”

Miss Stoodley said her daughter had been denied child mental health services (CAMHS) on the grounds that she was ‘likely’ to get an ASD diagnosis.

She added the CCG had not been transparent as she had never been told about the 52-week guideline.

DCCG AGREE TO MEET WITH PARENTS AND CAMPAIGNERS

DCCG has agreed to meet with parents and the campaign group, Dorset Parents Campaign for SEN Children to discuss the breaches.

MP for South Dorset, Richard Drax said at a recent meeting with people involved in the provision for autism there had been a “realisation or acceptance that things are taking far too long” and he said treating it as a “top priority.”

“I stressed that the period of time parents were waiting was unacceptable and there was total agreement with that,” Mr Drax said. “I was assured they are doing all they can to resolve this issue.”

Anne Salter, head of service NHS DCCG on behalf of the CCG and DCH said: “We acknowledge that young people and their families are experiencing delays in the west of the county and we have a strong team approach working hard to reduce waiting times.”

She added DCCG looked forward to meeting with the campaign group to discuss concerns in more detail.

DIAGNOSTIC PATHWAY

A spokesman for DCCG said: "Although performance is measured internally for this cohort of patients, as the pathway is diagnostic, there is not a requirement for performance to be reported as part of the 'referral to treatment' target.

"Both pre-school and school age children are referred to the paediatric department and will initially be seen by a paediatric consultant as the start of the diagnostic process, input will also be sought from other specialists, for example speech and language therapy, physical therapists, educational psychologists, as appropriate.

"Some school age children who are suffering with their emotional health may be referred to CAMHS. CAMHS may then decide an assessment of ASD is appropriate as part of a wider treatment package."