THE mother of a teenage girl awaiting an ADHD assessment is concerned about her daughter’s future as they may have to wait another year.
Ceri Wood, 41, is fighting for her daughter Harriet, 16, to be assessed for ADHD.
Characteristics that Harriet has had while growing up were put down to the childhood trauma of the death of her older sister Claudia.
In 2010, when Harriet was just four years old, Claudia was diagnosed with Acute Myeloid Leukaemia. She died a year later aged six.
Five months later, their younger brother Alexander was diagnosed with SVT (supraventricular tachycardia), a heart condition that led to needing heart surgery when Alexander was just three years old.
Ceri, from Bexhill, said that when it was eventually time for Harriet to return to school she struggled to make friends and socialise.
She said: “Harriet was always a little different to other children.
“For a long time, it was easy to attribute this to the trauma of losing her sister.
“To the difficulty of having had both her siblings have life-threatening conditions.
“Or to circumstances not allowing her to interact with other children as much as she might otherwise have done.”
Due to her school grades never suffering her parents were not overly concerned and hoped that over time she would feel more comfortable socialising.
However, when Harriet went to secondary school she began making friends during school hours.
Ceri said: “When her grades started going down it felt like it didn’t matter because it felt like a balance.
“She was interacting with people, still not outside of school because she struggled to engage after school.
“And then lockdown happened and she was supposed to be home learning and she really struggled with it.
“She couldn’t concentrate, she was easily distracted.
“I hadn’t experienced it before, because she’d been going to school and because she’s bright, it was all sort of balanced out and her not being able to concentrate didn’t really affect it.”
It took a while for Ceri to realise there was a problem and that these behaviours were not just a response to trauma and the pandemic.
When ADHD was mentioned to her in relation to Harriet, it seemed like an accurate diagnosis.
Ceri said: “There was this revelation.
“ADHD can mean different things for different people.
“Harriet’s inability to focus at all on anything that didn’t interest her could have a cause. “There could be a manageable condition behind her constant fidgeting, her rapidly changing interests, and her outbursts.”
Ceri believes that because girls, particularly at school age, typically present with ADHD very differently to boys, it did not get picked up throughout school.
She added: “Harriet’s quiet in class, she fidgets a lot but that’s all I thought it was.
“This image that people have in their heads of an ADHD primary school boy, isn't all it is.
“Her behaviours and mannerisms do match up with the symptoms for a girl, such as drifting off in conversations, an inability to focus, cannot retain information and the fidgeting.”
Because Harriet is in year 11, Ceri has missed the chance to get her assessed through the school and to help her get extended time for her GCSEs, she said.
She has instead begun going down the route of private assessments and has found that many of the waiting lists that they can actually get on are years long and expensive.
Ceri said: “Maybe she’ll have an assessment and they’ll say no this isn’t ADHD, this is trauma related or it’s autism or something but it feels like something that needs to be done for her.
“She wants to be done, she said she wants to know why she is the way she is.
“I’m scared it’s going to hold her back in college and university,
“I don’t want her to feel like her life would've been different if she'd had help with this.
“I don’t want her to feel like she’s stupid or lazy, even if it takes an expert explaining how she can do something differently or if it’s medication.”
Ceri spoke of the helplessness she felt when her other two children were ill.
She said: “When Claudia was ill there wasn’t anything I could do, beyond just being there for her, I was a spectator.
“And with Alexander as well, there wasn’t anything that could be done.
“But I can do this, I can find help for Harriet and I’ve spent hours researching and trying to find a way to get her this assessment.”
A spokesman for Sussex Health and Care Partnership said: “The number of children being referred for ADHD and ASC (Autistic Spectrum Condition) assessments has risen in recent years, and East Sussex has the highest rates of referrals across Sussex.
"We know how important assessment and the associated support is for young people and their parents and we are working with our health and care partners to improve waiting times locally.
“This year a dedicated team has been brought together in East Sussex, recruitment has close to doubled the number of professionals working in the team, and a new digital screening pack for referrers, families and schools has been introduced to speed up the process before assessment.
"Further to this, a new parent-led pre diagnosis support service for families and young people is due to go live in July this year, as well as an enhanced range of information and support post diagnosis, which we are confident will improve both the quality and waiting time for families waiting for assessment.”
Ceri has now launched a Gofundme page to help raise some money for a private assessment when she can secure one, and for follow up appointments and prescriptions.
To donate to the Gofundme please visit: www.gofundme.com/f/harriet-adhd
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