UK children experiencing chronic delays in ADHD diagnosis

Young people in the UK with ADHD are at "serious risk of social and mental health harm" because they experience some of the "longest and most complicated" delays to diagnosis anywhere in Europe, a group of experts is warning.

Nearly a third (28 percent) of children with ADHD can wait two or more years before receiving a diagnosis, while 51 percent of cases experienced a lack of recognition for ADHD as a real condition from those on the front lines of helping children, including GPs, specialists and school staff, according to the Shire-funded report, A Lifetime Lost, or A Lifetime Saved.

It also found that over a third (38 percent) of surveyed adults and children diagnosed with ADHD had to visit their GP at least three times before being referred to a specialist.

The report stresses that the consequences of ignoring the condition can range from school exclusion and increased risk of anxiety and depression through to self-harm and even suicide.

Given the current delays to diagnosis in the UK, the group says it want the government, the NHS, and schools to urgently review current mental health policies to ensure children with ADHD across the UK "are not falling through the gaps and are given the chance that they deserve to reach their potential".

"Despite major efforts to improve the stigma around mental health across the UK and decades of scientific and clinical research around ADHD, we are continuing to fail thousands of children who have one of the most common mental health disorders," said Dr Tony Lloyd, chief executive of the ADHD Foundation.

"Ignoring ADHD is a potential time bomb for these children, placing them at risk of severe problems that may well burden them for their entire lives. We urgently need to look at policies around ADHD and ensure that it starts to be recognised as a vital part of mental health reform moving forward."

As well as identifying lengthy delays, the report also highlight the negative consequences of delays to receiving specialist care. Results from a survey of 104 adults or parents of children diagnosed with ADHD across the UK showed that: 89 percent reported depressive or anxious episodes while waiting to see a specialist; 49 percent reported self-harm or considerations of self-harm while waiting to see a specialist; and 34 percent reported temporary exclusion from school while waiting to see a specialist.

"ADHD remains chronically underdiagnosed and access to services and treatment in the UK is woefully inconsistent," said Dr Matthew McConkey, Consultant Paediatrician, Lisburn Hospital, Northern Ireland. "Long-term solutions must be put in place by the NHS to ensure no child falls through the gaps – this includes improving the patient journey to diagnosis and challenging the stigma prevalent throughout the healthcare community."

Among the report’s recommended actions to improve the picture for patients is the provision of clarity on how reforms under the Five Year Forward View for Mental Health in England, and the Scottish Government Mental Health Strategy, will address the needs of children and young adults with ADHD specifically.

Also, "urgent" investigation is needed to explore the extent and cause of the postcode disparity being seen across the UK with regards to NHS ADHD care, as well as a plan to address this.

It also wants the government to issue a mandate to public services "to ensure that ADHD is routinely acknowledged within information or guidance on mental health."

The recommendations are backed by ADD-NI, ADHD Foundation, ADHD Norfolk, ADHD solutions, Adult ADHD NI, Scottish ADHD Coalition and Shire.