'We had five and a half years to wait for a full diagnosis': Readers have their say on autism assessment backlog

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The revelation that Leeds families are being forced to look abroad for autism assessments has struck a chord with YEP readers.

Dozens of comments have been posted on Facebook, Twitter and on the Yorkshire Evening Post website over the story, which revealed that testing by the NHS in Leeds has ground to a halt despite massive investment.

Ewa Walczyna and her son Harrison, who is awaiting an autism assessment. Picture by Gary Longbottom.

Ewa Walczyna and her son Harrison, who is awaiting an autism assessment. Picture by Gary Longbottom.

We found that just five children were assessed for the condition 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.

On average Leeds families, like that of Ewa Walczyna, from Garforth, whose six-year-old son Harrison has been referred to Leeds Community Healthcare Trust’s (LCH) autism team, were forced to wait nearly nine months for assessments last year – triple NICE’s national guidelines. The longest wait was 70 weeks.

The figures come 10 months after NHS clinical commissioning groups across Leeds announced they were investing £360,000 specifically to cut autism assessment waiting times in 2015/16.

Ewa told us that she was considering taking her son to Poland for a private diagnosis due to the expense of private diagnosis in the UK and the delays they face through the NHS in Leeds.

Julie Mumsykins Miller explained on Facebook that her family first sought a diagnosis for her son when he was aged two but only received one seven years later. She said: "My son is 19 now and still struggling but under adult team lets [sic] hope we get some support."

Emma Ruby Hall simply commented: "Currently been waiting for 10 months now."

Charlene McClelland has experienced similar delays. She wrote on Facebook: "Thought our son was in the spectrum at three and no diagnosis til [sic] nearly 10."

Anth Longstaff added: "We had to wait five and a half years for [sic] until a full diagnosis was issued."

The National Autistic Society (NAS) has warned that delays in diagnosis can leave children misunderstood, without the support they need and can even put them at risk of long-term mental health problems.

Other families have experienced fewer delays in other areas, including in nearby Bradford. Rob Roderick-Zabrocky said his son was picked up aged four as being on the spectrum and was diagnosed with an autism spectrum disorder within eight months. He said: "His primary school at the time were not good with it all, kept trying to teach him to be social at the detriment of academic learning, but his new academy is fantastic. Really feel for people struggling."

Through the YEP website, Swiss Cheese said: "Sad - yes, very much so. I can only imagine how hard it is to have a child with a condition like that. Tough reality of life - unfortunately, yes. The NHS was never and will never be able to deal with every condition effecting every one up and down the country."

Leeds Community Healthcare NHS Trust says it recognises the issue, which reflects the “national picture” that more young people are being referred, while the extra funds are aimed at reducing delays across CAMHS – not just autism.

LCH operations director Sam Prince said: “To ensure children and young people waiting for an autism assessment are seen as quickly as possible, we have been able to employ more staff to help reduce the CAMHS waiting lists, with those at ‘high’ risk being the first to receive care.”

The waiting list for CAMHS assessments, which address mental health issues, had 313 people on it in December – its lowest level since April. Ms Prince expects waiting times to “reduce further” in the coming months.

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