U-Turn Follows a North East Lincolnshire Mum’s Decision To Instruct Lawyers Following Two Year Campaign

A council has agreed to refer a girl from North East Lincolnshire with special educational needs for an autism assessment, following a two year battle by her mum to secure a diagnosis and support.

North East Lincolnshire Council operates a “Multi-Agency Access Pathway” which it states merges medical and social models to support children and young people with complex needs.

Rather than a doctor being able to refer a child to a psychiatrist for assessment where autism is suspected, all children and young people in North East Lincolnshire are first referred to this “Access Pathway”. The Access Pathway is the only route by which an autism diagnosis can be attained. A number of different professionals (which can, but don’t have to, include medical professionals) sit on a panel which decides the outcome of cases referred to the Pathway.

These arrangements have unfortunately resulted in a system where some children struggle for years to obtain the diagnosis that they need, in order to then be able to access the correct resources and support in school.

In one case, a 13 year old girl (P) was not referred for an autism assessment by the panel, despite multiple referrals to the panel dating back to 2018, all of which were made by professionals arguing that the possibility of autism in P’s case should be explored further.

Another rejection in May this year, prompted P’s mum Claire to instruct Jennifer Wright in the specialist public law and human rights team at Irwin Mitchell to challenge the panel’s decision.

Instead of referring P for an assessment of autism, the panel made repeated recommendations to the effect of referring the matter to other organisations for support, such as the special advisory service and other external agencies who could consider strategies such as a visual timetable, social stories or use of headphones. Their recommendations never addressed the underlying issues and never provided P with a diagnosis which could have led to more tailored support.

Claire was concerned that in de-emphasising the importance of getting an autism diagnosis, the panel was underestimating its importance. She felt that one reason she had been unsuccessful in obtaining an Education Health and Care Plan for P, was due to the lack of a formal autism diagnosis, yet the panel provided the only route to an assessment and kept refusing to assess P.

The legal experts at Irwin Mitchell wrote to the local authority in July, outlining the family’s concerns over the decision taken by the Access Pathway Panel not to refer P for an autism diagnostic assessment, indicating they were prepared to seek a judicial review of the case.

However not only was a challenge made to the individual decision made in P’s case, but the legal team argued that the Panel was operating unlawfully by following an irrational policy.

This is because the multi-agency pathway was introduced with the purpose of increasing support and access to relevant professionals/diagnoses, yet irrationally the pathway deferred and delayed referrals for diagnosis and assessment of a child’s needs. Concern was also raised over the fact that the Pathway breached statutory duties and the relevant NICE Guidelines and Quality Standards.

The council has now agreed to withdraw the decision made in May and to refer P for an autism assessment. Importantly, the council has also confirmed that a new Pathway panel will be trialled to address some of the concerns in the legal claim, and that a newly created post will review the existing service in line with the family’s concerns.

Expert Opinion

“The last few years have been a stressful time for P and her mum so we welcome the council’s move to withdraw its initial decision and offer a long overdue diagnostic assessment.

“P is a young girl with multiple special educational needs, including difficulties with interaction, communication, cognition and learning. She has social, emotional and mental health issues in addition to displaying numerous autistic traits, so this has not been an easy process and the failure of the local authority to refer her for diagnostic assessment has potentially held P back from two years of support she might otherwise have had.

“A diagnosis is often the “key” to accessing further support. While the Council’s changed position is great news for P and her family this case raises wider issues in relation to pathway policies.

"The creation of these panels is a relatively new development but we are seeing more of them in various councils across the country. The effect of having such panels is that children can no longer seek direct support from their GP and then be referred for appropriate medical support or psychiatric assessments.

"Instead, councils are delaying the process of these children obtaining an assessment or diagnosis by offering them alternative support. In P’s case, professionals had been consistently highlighting P’s autistic traits for 2 years but yet the panel was still refusing to refer her for a formal assessment and diagnosis." Jennifer Wright - Solicitor

P’s mum, Claire, said: “This has been a draining process for both P and I over the last few years and we are just happy we can proceed to the next stage of assessment and getting P some tailored support.”

“The council’s decision is a welcome one although it’s pretty clear the legal challenge played a key part in securing the right result for P. To downplay the importance of a diagnosis makes no sense to us and it makes you wonder how many more families might be in the same positon; unable to get an EHCP without a diagnosis, yet unable to secure a referral for assessment.”

P and her family were supported by campaigner and lead of North East Lincolnshire parents ‘Know Your Rights’ Group, Cora Leeson, who said: “I’m thrilled for P and Claire, but while the council’s move to trial a new pathway panel is welcome, parents will remain concerned that flaws with the old pathway aren’t adequately addressed under the new pathway.”

“Such panels exist in other areas of the country, and other children and parents beyond North East Lincolnshire may be unable to access the assessment and prompt diagnoses for autism their children need. As a mother who, like Claire, struggled to get an autism diagnosis for my son, I know how important a diagnosis can be in getting the much needed support these children deserve.”

Tim Nicholls, head of policy and public affairs at the National Autistic Society, said: “A diagnosis can be life changing. It can explain why someone has always felt different, help them get vital support and take control of their lives. But too often, autistic people and their families have to fight for a diagnosis, for months or even years.

“This case will be deeply concerning for many parents and autistic people looking to secure the support they are entitled to. It underlines the importance of parents being aware of their rights and those of their children when seeking a diagnosis and support. If you’re looking for information or support, visit autism.org.uk”