Autism Waiting Times For Assessments ? School Age 4 - 5 Years ? How Does Your Manor Stack Up?

Specific disabilities and conditions
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Just one … Halifax region , West Yorkshire … is this typical ???

**Waiting time for Calderdale children autism assessments revealed.

Calderdale families waiting for an autism assessment for their child should not have to wait more than 12 months by early next year, say council and health chiefs.**

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Calderdale’s’s 2017-18 Health and Wellbeing Report from last summer detailed waiting times for pre-school children of 12 months while school age children were waiting four to five years and although moving in the right direction there is still work to be done, they say.
Calderdale Council’s Children and Young People’s Scrutiny Board heard a new provider of the autism spectrum disorder (ASD) assessments has been commissioned by Calderdale NHS Clinical Commissioning Group (CCG), with families were given a choice of remaining on the waiting list of current providers or taking up the offer of an assessment through the new provider.

In 2016, the CCG commissioned work to address backlog of assessments but this did not solve the longer term issue of increasing demand.

CCG Senior Service Improvement Manager Rhona Radley said the next stages of the process were to agree the plan and intentions for school-age children initially, and then review pre-school children to ensure both groups of assessments were inside 12 months, the current position showing this was achievable.

Ultimately, members heard later in the meeting that the aim was for the waiting list in Calderdale to be within three to six months, in line with National Institute for Health and Care Excellence (NICE) guidance, though implementation would be pending the clearance of the waiting list.

Board members asked questions about issues including support for young people as they transitioned to adult services, support for pre-school children including the effect not getting a diagnosis before starting school would have on them and support for schools.

Among responses given were that young adults over the age of 18 would be accepted into adult services, although Child and Adolescents Mental Health (CAHMS) services does cover up to age 25.

Officers said once children were diagnosed with ASD, the council had a role in supporting them and the team responsible had received excellent feedback following the recent inspection of SEND services by watchdog Ofsted.

Types of support now available to families were outlined to the board.

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**Autism : " Unprecedented " demand creates long appointment waits.

New data suggests some patients thought to have autism waited over 19 weeks for their first mental health appointments.**


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Patients at 10 out of 25 English health trusts waited an average of 137 days or more following referral, against a target of 91 days, in spring 2018.

The National Autistic Society (NAS) said the limited NHS statistics were “disappointing” as they only cover about a quarter of people referred.

NHS trusts said services had experienced “unprecedented” demand.

Jane Harris from the NAS said: “Long waits can be traumatic for autistic children, adults and their families, who are often already vulnerable.”

“For the first time - after years of campaigning - we have NHS statistics on how long children and adults are waiting for an autism assessment in England,” she said. “It’s an important first step but the data itself is deeply disappointing.”

The NAS has been campaigning for a trust by trust breakdown of waiting times but said the first such figures to do that do not provide a clear national picture.

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" Can’t wait any longer "

More than two years after a teacher suggested her son may have the disability, Natasha Webb, had to pay privately for her son to be assessed for autism.

The 47-year-old from Shrewsbury said she waited about three months for a first appointment via the NHS and although several reports were written by teams at Midlands Partnership NHS Foundation Trust, no official diagnosis was forthcoming.

Ms Webb, who is a full-time carer to 11-year-old Maxim, said it was an “exhausting, constant battle” to get him any help or support which left her feeling “written off”.

As Maxim began secondary school, Mrs Webb said she borrowed money from her parents to have a private assessment, which cost £1,000.

“I couldn’t wait any longer,” she said. “I was up against educational welfare officers when he won’t go to school and because we didn’t have a diagnosis, it was my word against theirs.”

NHS Shropshire Clinical Commissioning Group and Midlands Partnership NHS Foundation Trust said it continued to see “an unprecedented level of demand” for its autism services.

“We understand and appreciate the frustration felt by families who have been waiting longer than they should for an autism assessment,” a spokeswoman said.

“Additional capacity has been put in place to address the current waiting list in Shropshire and Telford & Wrekin, prioritising those who have been waiting longest to receive an assessment,” she added.

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The government has said people with possible autism should be assessed by mental health services within three months of being referred to avoid impairing an individual’s development and placing pressure on families and carers.

Figures were published for 39 NHS trusts, but average waiting times were suppressed for 14 of them due to low numbers and to protect patient confidentiality.

Of the remaining 25 trusts, 10 reported average waiting time 50% or more above the three month target between April and June 2018.

The average waiting times relate to only a quarter of patients - about 1,430 out of a total of almost 5,200, because in the majority of cases NHS trusts did not provide the dates on which patients were in contact with mental health services.

" Not acceptable "

Southern Health Trust reported an average waiting time of 221 days between April and June 2018.

Rob Guile, from the trust, said demand for its services had grown by more than 20% since 2015.

“Whilst we have received a slight increase in funding during this time, the increased awareness of autism and subsequent demand has not resulted in as big a reduction in our waiting lists as we’d hoped,” he said.

“We agree that the current waiting times are not acceptable for local people,” he added, saying the trust was in discussions to review its service and funding.

Norfolk and Suffolk NHS Foundation Trust reported an average wait of about 196 days over the same period.

Stuart Richardson, chief operating officer of Norfolk and Suffolk NHS Foundation Trust, said: "The average number of monthly referrals received by the Suffolk Youth Autism Diagnostic Service has increased by 37% from 19.2 in 2017 to 26.3 so far in 2019.

“We are working alongside our commissioners to reduce waiting times and to review the current service.”

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**Children waiting up to three years for autism diagnosis, poll reveals.

Parents in UK report feeling " Isolated and helpless " during wait for formal identification.**


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**_Almost half of parents whose children have been referred for an autism assessment have to wait 18 months or more for a formal diagnosis, according to a survey.

The charity Ambitious about Autism polled almost 4,000 parents of children with autism and found that in the most extreme cases families reported waiting three years for a diagnosis.

Even after a diagnosis is made, many families go on to struggle to get the right help for their child’s needs, the charity says. “Many parents say they feel isolated and helpless as they wait to find out if their child has autism,” said Jolanta Lasota, the chief executive.

“To make matters worse, our research tells us that even when families receive an autism diagnosis, they continue to struggle to access adequate help to understand and support their child’s needs and help them feel positive about the future.”

According to Ambitious about Autism, about one in 100 children in the UK have autism, with four times as many boys diagnosed as girls. Of those parents who took part in the poll, 49% said they waited 18 months or longer after referral to the point of diagnosis. A further one in five (19%) said it took between 12 and 17 months.

About 70% complained they were not offered adequate support after diagnosis, while a number reported being left without a follow-up appointment or additional information about support groups.
“Autistic children have so much potential but we know that the earlier they can benefit from the right support and interventions, the easier it is for them to thrive and achieve as they grow up,” Lasota said.

One Kent mother described waiting two years for a diagnosis for her four-year-old son. Receiving the diagnosis gave her the confidence to seek support.

“I didn’t think I could go to the GP with concerns about my son’s development,” she said. “I lived this life day in, day out, worrying he might have something like brain cancer, or wondering if I was just a bad mum, and not knowing how to help him.”

The charity has launched an online toolkit for parents of children aged five and under that offers information on assessments, diagnosis, development and support available.

A Department of Health and Social Care spokesperson said: “Autistic people deserve a timely diagnosis, in line with Nice guidelines, to help them access the right support.

“Increasing the help available is one of the top priorities in our NHS long-term plan, which commits to reducing waiting times for children and young people.

“We will also publish a refreshed autism strategy later this year to ensure it is fit for purpose and are extending the scope of the strategy to include children.”_**