The children left ‘languishing in the system’ by chronic autism test delays in Leeds

Vicki Reedman whose son Lucas, six, is awaiting an autism assessment. Picture by Tony Johnson.
Vicki Reedman whose son Lucas, six, is awaiting an autism assessment. Picture by Tony Johnson.
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Misunderstood Leeds children are “languishing in the system” due to huge waiting lists for autism assessments that can unlock support, it is claimed.

Vicki Reedman, from Bramley, has been fighting for her son Lucas, six, to be assessed for three years and was finally issued a referral to Leeds Community Healthcare NHS Trust’s (LCH) autism team in June.

In a bid to tackle assessment waiting times in Leeds, which were almost three-times longer than the 12-week NICE guidelines last year, she was told she could opt for an NHS-funded private assessment in Huddersfield in September. Lucas is still waiting and Vicki claims he is unlikely to be seen before May.

LCH said it is working to cut delays but claims to have recruitment issues, so has funded dozens of private tests in Huddersfield since April, costing £162,500 so far.

Lucas, who was non-verbal until the age of four and a half, has fallen behind his peers and has been held back a year in school. Vicki claims he was even excluded for behaviour she puts down to developmental disorder autism last year.

It comes after Yorkshire Post Newspapers revealed NHS testing in Leeds has ground to a halt despite a £360,000 investment by NHS clinical commissioning groups last March, which was aimed at cutting autism assessment waiting times in 2015/16.

Just five Leeds children were assessed by the NHS from July until mid December while 140 Leeds children awaited autism tests – no new cases were opened by the NHS in Leeds in August or October.

Vicki, who works as an optician, said: “If the NHS doesn’t pick up on this, like my little boy, they’ll just end up languishing in the system. He can’t read, he can’t write and he’s behind his peers. The diagnosis could open up a whole new world.”

She first noticed Lucas was having issues aged three but feels his school has seen him as a “naughty child”. He struggles with eye contact, understanding and breaks from routine.

Earlier this week we told the story of a Leeds parent who is considering taking her six year old to Poland for private testing, stating that such assessments in England can be more than £700.

But Vicki claims the NHS often refuses to acknowledge private diagnoses, leaving parents at a “dead end”. She said: “They [Child and Adolescent Mental Health Services] are understaffed and overworked but that’s not my problem.”

Leeds City Council’s health scrutiny board chief Coun Peter Gruen has called for answers from the NHS over the figures he has described as a “tragedy”.

He said: “In a compassionate city we need to know why very vulnerable young people do not get a better deal.”

The National Autistic Society has warned that the “unacceptably long” delays in Leeds can put children at risk of long-term mental health problems.

LCH operations director Sam Prince said this week that children perceived as being at “high risk”, through CAMHS or the autism team, have been the first to receive care since the £360,000 investment.

A trust spokeswoman said: “Children and young people waiting for specialist autism assessment should be seen as quickly as possible.”

Meanwhile the waiting list for CAMHS assessments, which address mental health issues, had 313 people on it in December – its lowest level since April.

LCH expects waiting times to “reduce further” in the coming months.

Toby Rye.

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