An East Lothian mum waited years for a “life-changing” ADHD assessment before being forced to spend over £1,000 on private care.
Annie Chase, 42, entered the NHS waitlist for assessment back in 2020.
Like many who are diagnosed later in life, Annie grew up with people telling her she was lazy. In 2014, she was misdiagnosed as having bipolar 2.
It wasn’t until 2020 that she began wondering if she had ADHD. However, the path to being assessed by the NHS can stretch for years.
There were over 3,500 people queueing for assessment in 2023 in Edinburgh alone. In the same year, over 700 adults in East Lothian were referred for a neurodiverse disorder.
While waiting for her assessment, Annie’s husband suffered a severe neck injury in 2021 which left him with significant mobility issues. Annie found herself caring for her disabled husband as well as their three children with autism – while simultaneously struggling with undiagnosed ADHD with “no support”.
The Haddington resident said: “I felt like I was drowning. I couldn’t keep up with the demands.
“I was doing literally everything. I couldn’t physically and mentally do all this on my own.
“I was completely overwhelmed and in crisis. There were so many people depending on me.”
ADHD is an attention deficit hyperactivity disorder that can cause problems with organisation, time management, focusing on tasks, and coping with stress.
The disorder can often go undiagnosed, according to the NHS.
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Annie and her husband eventually decided to use the insurance payout from his neck injury to pay for an ADHD assessment from a private provider.
After spending £950 on the assessment, she was diagnosed with ADHD and spent a further £200 on two months worth of medication.
Annie said the treatment made “a world of difference,” allowing her to begin tasks, give her more headspace, and feel more “in control”.
She added: “Task initiation was a big problem. I used to dwell on what I had to do. Medication made it so I can manage getting laundry done and doing dishes and all our appointments are kept.”
But the biggest change for Annie was the validation the diagnosis provided her. For years people told Annie she was lazy, but the diagnosis confirmed that her struggles were real and outwith her control.
Annie said: “Everyone my whole life has said ‘you’re lazy.’ It affected the way I thought about myself. For 20 years I told myself I was lazy and couldn’t overcome it and didn’t know why. But [now I know] it’s executive dysfunction.
“I envy people who get diagnosed early because they don’t grow up with those feelings of inadequacy. Through years of misdiagnosis and no diagnosis, I’ve never understood the way that I am.
“I’m trying to reprogram my brain in my forties now.”
Annie now receives free ADHD medication through the NHS after transferring the diagnosis from her private provider.
However, she expressed frustration with the system that made her wait years for care.
The mum-of-three is now in the process of getting one of her daughter’s assessed for ADHD.
Annie said: “She’s not at a crisis point but why do we have to wait until people are at a crisis point to do something? Having been at a crisis point, I wouldn’t wish on my darkest enemy.”
Fiona Wilson, Chief Officer of East Lothian Health and Social Care Partnership, said: “We apologise to patients who are waiting too long for an ADHD diagnosis and treatment and would like to reassure them we are working closely with NHS Lothian and other local and national partners to look at how we might redesign our pathways to better meet patient needs.
“Neurodevelopmental presentations are complex to assess, with overlaps and similarities between different conditions.”
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