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Medway mum speaks out as lockdown causes delay in ADHD and ASD assessments

A mum says her child is being failed due to a delay in confirmation he has autism.

Louise Irwin, from Chatham , thought she knew what to expect from the process of getting a diagnosis but says the assessment of her son, four-year-old Lochlan, was handled unfairly due to lockdown.

The mother-of-five said: "This little boy has struggles on a daily basis. He can't cope. I've been told by occupational therapists and physical therapists who struggle to work with him that he's definitely got autism, as well as the sensory processing disorder, and possibly ADHD as well."

It had been a struggle with her older son, Jackson, who was diagnosed with ADHD after six years, so Louise knew to expect a three-hour session with a number of specialists when she took Lochlan to an autism assessment earlier this month.

However, only an occupational therapist and paediatrician greeted her and the appointment lasted less than an hour. Straight away, she was told her son could not be diagnosed because he was "too sociable".

Louise reported an array of symptoms in her son, including needing a fixed routine, being two years behind in school, frequent meltdowns, no awareness of toilet training and finding it hard to keep focused.

"The assessors ignored all of this," she added. "I stated to assessors he needs help and the right support. But now they won't give him this diagnosis."

Louise's sons Lochlan, left, and Jackson
Louise's sons Lochlan, left, and Jackson

To make matters worse, the family have been told they must wait more than a year for a second opinion. Without an autism diagnosis, Lochlan will not be accepted into a special needs school and the family cannot apply for the grant they need to support his care.

Louise said: "We came out of the appointment very disheartened. His school has said they've tried everything to support him. I need him to go to a special needs school but the assessors told me they did not believe it would help him. They said he needs therapy."

Lockdown has only made things harder as the family could not attend medical appointments or access support networks face-to-face.

The 36-year-old added: "If they can't give a fair assessment like they normally would then they shouldn't be doing them at all. Otherwise we are told our children don't have these problems, then told they do have these problems years later. But by then they've lost the support and help they needed. It's failing the child."

Dr Tony Lloyd, CEO of the ADHD Foundation, said problems with appointments moving online, being delayed and not being carried out properly has become increasingly common across the country during lockdown.

Dr Tony Lloyd, CEO of the ADHD Foundation
Dr Tony Lloyd, CEO of the ADHD Foundation

Dr Lloyd added: "There was already a very substantial waiting time of two or three years, which is clearly not acceptable. But we have had them for such a long time, it's almost become the norm.

"Assessors rely on information from the family, and particularly information from the school in order to be able to make a triangulated assessment.

"If the school has been closed and they've not been able to contact the school, then that might be one of the reasons why they're not able to progress assessments any further."

His concerns were echoed by the disability charity We Are Beams. A spokesperson added: "This is a huge concern for many parents and could impact on children and young people accessing appropriate support.

"Lockdown has had a major impact on the assessment process for these conditions and I suspect clinicians will be desperately trying to come up with alternative ways to get the assessment process back on track."

“The impact of Covid has resulted in fewer diagnostic assessments being completed over the last few months."

Lochlan's assessment was carried out by a service commissioned by NHS Kent and Medway Clinical Commissioning Group (CCG), which is in charge of NHS health services across the county.

Dr Navin Kumta, clinical chair of NHS Kent and Medway CCG said: “The impact of Covid has resulted in fewer diagnostic assessments being completed over the last few months, however we are assured where assessments were undertaken, the quality has remained high.

“Some of the diagnostic tools for Autism Spectrum Disorder (ASD) have not been able to be used due to the restrictions in their effectiveness when wearing personal protective equipment but provider organisations have adopted and are using approved alternative models of assessment and diagnosis.

“A significant proportion of children referred for an assessment for ASD or Attention Deficit Hyperactivity Disorder (ADHD) do not receive a diagnosis, however all families do receive support and guidance in managing their child’s presenting behaviours.”

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