Parents awaiting an autism diagnosis for their children are still in the dark — 18 months after first being referred.
Last October, the Autism Diagnostic Research Centre (ADRC) at Southampton, where Isle of Wight children are assessed, closed for new referrals after the waiting list became unmanageable.
Parents still in the dark
The service was then taken on by the Isle of Wight NHS Trust. However, six months later parents say they are still waiting for news about what will happen next.
A report, due to go before the Isle of Wight Council’s policy and scrutiny committee for children’s services on June 7, indicates a referral pathway will soon be in place and additional funding of £175,000 will also be allocated to address the backlog.
Slipped timings
However in the report, deputy head of commissioning Gordon Pownall acknowledged ‘timings have slipped due to recruitment’ and that ‘general communication has not been as comprehensive as it may have been’.
He added:
“Progression has been slow due to lack of clinical resources and we do acknowledge the need to expedite establishing a new service as promptly as is possible.”
The new system will see children and their families referred to Barnardos, family centres, the Special Education Needs Service, the Isle of Wight Youth Trust, health visitors and school nurses.
Waiting since October 2017
One concerned parent, who asked not to be named, has been awaiting a diagnosis for her child since October.
She said her other child, who has an autism diagnosis, attends school on the mainland and boards Monday to Thursday, due to a lack of provision on the Island.
She said:
“The 150-170 children that were referred to the previous diagnostic service before it closed in September are still waiting to be seen. Nobody knows how many children have been referred since September.
“The new referrals are being sent to the Arthur Webster Clinic in Shanklin, but nobody is doing anything except putting them in a pile. The CCG claim that ‘there aren’t very many’ however they have no way of knowing this.
“They also admit some GP practices may be holding onto them until they know who will be doing the assessments.”
“Overly optimistic” funding
The concerned parent said although she felt ‘reassured that they are clearly moving forward’, the time-scale and funding allocated by the report looked overly optimistic.
Adding,
“An experienced clinical psychologist is going to cost more than £50,000 per year. A psychiatrist will cost the same part time. So once they’ve engaged those, they’ll be left with very little for other psychologists and support staff.”
“An horrendous situation”
Michaela White has three children — two of whom have been diagnosed with autism and one who has been on the waiting list now for 18 months.
She said:
“It’s an horrendous situation — families are falling apart, children are not coping at school and having to be home educated (and not really through choice) and so parents are having to give up work.”
This article is from the BBC’s LDRS (Local Democracy Reporter Service) scheme, which OnTheWight is taking part in. Some additions by OnTheWight. Ed
