Autism diagnosis blackout over

Thursday 08 March 2018

Health & Social Care's system for diagnosing children and young people with autism has started operating again, after being suspended for five months.

The system had not been accepting new people since October last year, meaning GPs were not able to refer children to start the formal diagnosis process or to add them to any kind of waiting list.

The suspension itself was in place because of the departure of the previous paediatrician, whose experience was needed to "contribute to the process".

"The diagnostic process is long and extensive and having been made aware of the pending departure, HSC took the decision to temporarily suspend bringing new children and young people onto the pathway until we had clarity about when the paediatric support could be resumed," a Health & Social Care spokesperson said.

"While a number of practitioners from different services are part of the pathway, a formal diagnosis cannot be made without an appropriately experienced paediatrician. A locum paediatrician is in place and being supported by other paediatricians and colleagues from HSC pending the recruitment of a permanent post holder. All are working hard to ensure a backlog does not occur."

Catherine Hall, the National Autism Society's Guernsey branch officer, said while it is good the situation has finally been resolved, it was a completely unacceptable and nonsensical decision: "The problem is with autism diagnoses is they're complex. They're based on history, observations and judgement and every one is subjective, so to reduce that best practice is to take a team approach."

She said "They didn't actually announce this - it just happened, and I only found out through parents contacting me that had been turned away. I have been asking them about it ever since and trying to get them to explain their decision. Several times I raised why there was no waiting list and they would always say it was pointless as it wasn't going to go anywhere, but they didn't seem to understand that for a parent who thinks their child might have autism, it is very reassuring to know something has been done, even if that is just your child's name being written down somewhere official - they are going to have to wait either way. There is no reason I can think of other than to manipulate the stats."

Mrs Hall said she recently reported the matter to the Scrutiny Management Committee because HSC had "declined to properly justify their decision".

"The whole debacle really highlights some of Guernsey's shortfalls in social care. Autism was one of the three areas prioritised under the Disability & Inclusion Strategy and yet there was no plan B in place. It sets an appalling precedent."

While the diagnosis pathway's suspension was in place, HSC said that families with a child who may be autistic did continue to receive access to additional services and support.

"A formal diagnosis of autism is not a criteria necessary to access service and support where it is deemed a child may have additional needs," the spokesperson said.

"The Resource Allocation Panel, a multi-disciplinary panel which sits fortnightly to consider what services and support may benefit families caring for children with additional needs, continued to consider any referrals or requests for services from any family awaiting entry onto the diagnostic pathway."