Young people with autism face long waits for assessment
Delays of almost three years under fire
CHILDREN IN some areas of Yorkshire, who have been identified as having autistic traits, are having to wait almost three years for assessments to unlock crucial support.
An investigation by The Yorkshire Post has revealed serious delays across the county are leaving families potentially affected by developmental disorder autism waiting up to 150 weeks to be assessed.
NICE guidelines state that length of time between referral and assessment should be no longer than three months.
New statistics for June show the South West Yorkshire Partnerships NHS Trust (SWYT), which carries out tests in Barnsley, Kirklees, Calderdale and Wakefield, left one family waiting 1,053 days for an assessment while its average wait was 66 weeks.
SWYT said it recognises the difficulties that delays create for families but said it was hoped extra funding from NHS clinical commissioning groups (CCG) in Calderdale and Kirklees would tackle the issue over the next year.
Huddersfield MP Barry Sheerman, who founded the Parliamentary Commission on Autism, has branded the assessment delays a “scandal” and claims the services in his constituency rank as among the worst in the country.
Autism charities warn that delays in diagnosis can leave children misunderstood.
“This is a scandal that’s going to be increasingly exposed by the Autism Commission, we are not going to put up with this,” Mr Sheerman told The Yorkshire Post. “This is endemic in the system.” According to figures obtained under the Freedom of Information Act, trusts across Yorkshire are failing to meet NICE guidelines for autism assessments overall and several cases have been recorded in which children were forced to wait more than a year to be assessed.
In recent months one family had to wait more than 96 weeks for an assessment by the Tees, Esk and Wear Valleys NHS Foundation Trust, while Sheffield Health and Social Care NHS Foundation Trust recorded one delay of almost 94 weeks.
SWYT’s director for specialist services, Carol Harris, said CCGs in Kirklees have spent an extra £340,000 on autism assessments and will invest further in 2017, while extra investment from Calderdale CCG aims to clear localised waiting lists in the next year.
She said: “We acknowledge there are currently long waiting times due to the demand on the service, and recognise that this is difficult for families. We are working closely with the local CCGs to improve on these waiting times.”
This is a scandal that’s going to be increasingly exposed. Barry Sheerman, Huddersfield MP
VICKI REEDMAN knows only too well the battle parents are facing to unlock crucial support for their children.
The Leeds mother had been fighting for her six-year-old son to be assessed for three years before she was finally issued a referral to Leeds Community Healthcare NHS Trust’s (LCH) autism team in June.
Lucas, who was non-verbal until the age of four-and-a-half, has fallen behind his peers and has even been held back a year in school.
Ms Reedman, who lives in Bramley, claims her son was even excluded for behaviour she puts down to developmental disorder autism last year.
“Who knows the impact it’s had on Lucas,” she told The Yorkshire
Post.
“How can you say it couldn’t have helped him?
“We never had that help at the most crucial time when he was being held back.”
The youngster has awareness issues, poor understanding, struggles with eye contact and has a need for routine.
She first noticed Lucas was having issues aged three but feels his school has seen him as a “naughty child”.
She added: “Parents shouldn’t have to fight for this, but everything is a fight when you’ve got a child with a mental health disability just because there’s nothing out as there’s never any funding – that’s what we always get told.”
Ms Reedman was finally invited to see autism specialists and the Leeds trust claims, through “working more efficiently” and recruiting new staff, it is on track to meet national targets by March 2017.
Earlier this year the Leeds trust pledged to bring waiting times down in line with NICE guidance by December.
But new figures show that since December 2015 the waiting list has grown from 140 cases to 191 in June, while the average wait was still more than twice the target time in March.
The Yorkshire Post revealed earlier this year that just five Leeds children were assessed by the NHS from July until mid December – no new cases were opened by the NHS in Leeds in August or October.
Tim Nicholls, policy manager at the National Autistic Society, said: “An autism diagnosis can be lifechanging.
“It can explain years of feeling different and help unlock professional advice and support.”
He continued: “Long waits can be devastating – it can put a huge strain on already vulnerable families and mean children go through school without the right support in place, which can affect their long-term prospects.”
We never had that help at the most crucial time
Vicki Reedman