A child's distress, a parent's tears: waiting for ADHD help is hell

The Herald Scotland

2 days ago

Blair would do risky things without thinking. Kirsten, from East Lothian, says she gets traumatised just thinking about lockdown during Blair's P1 year.
'He really didn't do well at home,' she says. 'For us as a family it was tough. Now, looking back, his brain was going at 100mph and we didn't realise.
Things came to a head when Blair was in P2. 'He was doing stuff that was so impulsive I thought he was going to harm himself.'
She describes 'umpteen disagreements, tension, stress and frustration' as she struggled to manage Blair's behaviour without understanding what was causing it. 'People do not understand how hard it is as a family unit,' she says.
Kirsten took Blair to the GP who quickly agreed that he needed further investigation, suspecting ADHD. She gave Kirsten and her family a huge questionnaire to fill in about Blair's symptoms.
After eight months, Kirsten heard that a panel had reviewed the questionnaire and decided Blair warranted further investigation. Then everything went quiet again.
Kirsten says: 'I emailed them, I asked if he was anywhere near the top of the list, because I was really struggling.
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"There was nothing, there was no support. It was no one's fault, I'm not blaming anyone, but I would phone or email and they would say we can't say whether you're any further forward, we can't say to you how near he is to the top.'
Finally, after another 13 months, Kirsten was given a date for an assessment. The diagnosis when it came was definitive: ADHD.
It had taken nearly two years.
Getting a diagnosis brought one overwhelming emotion for Kirsten: relief. Blair got a book explaining in child's language what ADHD is and describing coping strategies. Blair's school now had a better understanding of Blair's behaviour and put the family in touch with the charity Children's First for additional support.
The diagnosis put Kirsten in a stronger position when advocating for adjustments to be made for Blair at school and elsewhere.
Yet now Blair is on another waiting list – for a possible course of drugs – with no end in sight.
There are thousands of families going through this in health boards across Scotland. Usually, children seeking an assessment for neurodevelopmental conditions like ADHD or autism go through child and adolescent mental health services (CAMHS). The Scottish Government says it is now meeting its 18-week waiting time target for CAMHS, but that is for the initial appointment only. Neurodivergent children are typically referred on to other much longer waiting lists for assessment. Those waiting times are not published.
Demand for assessments has increased, so much so that Tayside Health Board has stopped accepting referrals unless a child has a pre-existing mental health condition too.
The tears of parents are an indictment of the broken system. Kirsten says: 'I feel sorry for anyone entering the waiting lists now because they'll probably never get to the end of it within five years and it's awful.
'They don't have enough staff, CAMHS, they don't have enough resources.
'Something's got to give.'
But what? Campaigners and parents point to a growing rhetoric from government around the idea of getting children support – in schools for instance – without a diagnosis, taking the emphasis away from the assessment. This was underlined last month in an official review.
Everyone is keen that children get support regardless of diagnosis and everyone understands the huge pressures on CAMHS. Dedicated staff are working flat out and there is much goodwill towards them.
But the reduced focus on diagnosis worries many parents. Is this really about what children and their families need, or is it being led by a desire to reduce demand for CAMHS?
They strongly suspect the latter – and that's a problem, given how important diagnosis often is.
Some parents find it hard to get professionals to respond to their child's needs without a diagnosis, but they themselves can also feel hopelessly ill-informed about their child's challenges without one.
Learning that a child has autism or ADHD is a daunting moment for any family. Neurodevelopmental conditions vary enormously in how they affect individual children. Without expert assessment, parents can't be sure what's causing their child's difficulties, how severe it is, their child's individual strengths and challenges, how they may be affected in future and how best to support them.
Is there a a desire to reduce demand for CAMHS? (Image: PA)
The move away from medical diagnosis also heaps more pressure on teachers by creating the expectation that they will provide an expert view on a child, when most don't have the training to do so and are already overwhelmed by the level of need they are trying to cope with.
A diagnosis is not in itself the answer, but for many families it's a key part of the process.
In April, the Royal College of Psychiatry urged ministers to be more transparent about these 'hidden waits' and called for ring-fenced funding for neurodevelopmental assessment pathways. They warned long waits meant young people couldn't be adequately supported, with some going on to develop mental health conditions on the back of neurodivergent conditions.
Difficult though it is for a cash-strapped government, it's clear that the answer is more capacity in the system, not trying to move away from expert diagnosis.
Blair's diagnosis was in May 2024. Since then, he has been waiting for a course of medication to reduce his symptoms. Kirsten is now worried that he may not have the chance to try it before starting secondary school next summer.
She is worn out by it all. 'It's the radio silence that really hurts sometimes,' she says, adding that it can feel like they've been forgotten.
'Every child who's got it deserves more than that.'
Rebecca McQuillan is a journalist specialising in politics and Scottish affairs. She can be found on Bluesky at @becmcq.bsky.social and on X at @BecMcQ