Exclusive: Parents forced abroad for crucial autism assessments as Leeds NHS testing grinds to a halt despite £360k injection

Ewa Walczyna with her son Harrison at their home in Garforth, Leeds. Picture by Gary Longbottom.

Ewa Walczyna with her son Harrison at their home in Garforth, Leeds. Picture by Gary Longbottom.

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Desperate parents are being forced to look abroad to have their children assessed for autism after it emerged NHS tests in Leeds have ground to a halt despite massive investment.

A Yorkshire Post Newspapers investigation has revealed 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.

LCH 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 Child and Adolescent Mental Health Services (CAMHS) – not just autism.

After months of delays, Mrs Walczyna claims she has been told Harrison could have to wait a year for an assessment, so is considering taking him to Poland for a private diagnosis in April.

Harrison Walczyna and his kitten Protty at their home in Garforth, Leeds. Picture by Gary Longbottom.

Harrison Walczyna and his kitten Protty at their home in Garforth, Leeds. Picture by Gary Longbottom.

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.

Mrs Walczyna, a care worker who moved from Poland nine years ago, claims she was initially told to be more strict and held herself responsible for Harrison’s issues with communication and rules.

“I was blaming myself, I thought I did something wrong or didn’t punish him enough,” she said. “I tried to do it and it got worse and worse.”

She continued: “All the time we’re struggling, we get no help or support. I had no idea how hard it is to deal with a child on the spectrum on a daily basis.

Ewa Walczyna with her son Harrison at their home in Garforth, Leeds. Picture by Gary Longbottom.

Ewa Walczyna with her son Harrison at their home in Garforth, Leeds. Picture by Gary Longbottom.

“Everything I know and every bit of advice I get is from parent support groups or books I read.”

She visited her GP in April as Harrison’s behaviour was different to his peers at school, where autistic traits were first noted. He was seen by CAMHS in November, referred and told he may face a year on the waiting list.

Mrs Walczyna, 36, said: “I’m thinking of having him seen in Poland because I can’t get it done here. If we go private it might be £700 here but it might be much more.

“It can’t wait because I want the school to be able to support him more. He’s struggling – there’s nothing else we can do.”

The NAS has been campaigning for autism assessment waiting times to be tackled nationally in recent months. A spokesman said that families in Leeds were facing “unacceptably long” delays that can put “families into crisis”.

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.

Campaign to monitor waiting times

Delays in autism diagnosis are a national problem, which have a footing in Yorkshire.

The National Autistic Society (NAS) sent a letter signed by almost 12,000 people to the Government on the issue through its Autism Diagnosis Crisis campaign last year.

The charity wants the Government to commit to monitoring autism assessment times across England.

Tom Purser, community campaigns manager at the NAS, explained that diagnoses can be the key to unlock barriers to essential support and services.

He said: “Delays can have serious knock-on effects on a child’s education and long-term development.”