'I needed to understand myself' - Founder of Yorkshire ADHD and autism clinic on assessment and diagnosis

Until six months ago, Jonathan Edgeley was among the other eight, one of tens of thousands of people living with undiagnosed ADHD. “There was always an uneasy feeling within me that something wasn't quite right,” the 49-year-old says. “I’ve been in senior level executive positions and sat in board meetings and other important engagements and found it phenomenally difficult to focus and concentrate and listen.

"It took me a huge amount of effort and I had to put certain tools in place in order to capture the information that was being shared with me. I'd really have to train myself and my brain to be able to remain and sit and stay engaged and look like I was listening to somebody even when I wasn't. I'd learnt over the years to come up with these coping mechanisms, these masking mechanisms really, so people didn't realise I was struggling or so that I didn't look disinterested in what they were saying.”

It was, however, all leading to burnout for Jonathan, the founder and CEO of Sheffield-based Montrose Health Group. “I was finding life really challenging,” he reflects. “It was becoming limiting for me and my ability, I felt, to manage and run the business how I needed to and also manage all of my external life engagements and family engagements."

ADHD is typically characterised by a persistent pattern of inattention and/or hyperactivity and impulsivity. Jonathan says since knowing he has it, life has become “a lot more manageable”, with the help of medication, tools and adjustments. “Having that diagnosis and understanding what it is that I have has really taken a lot of weight off my shoulders because I gave myself a hard time about things,” he says. “I no longer feel that I have to put on a front and I have to put on a mask around it, it was like I knew I could be open (now). There was an element of freedom to knowing that.”

Diagnosis can be life-changing and life-affirming. Jonathan knows that. His organisation, a private healthcare service which specialises in the treatment of addiction, mental health and neurodiversity, launched an ADHD and autism clinic in South Yorkshire last year. It offers assessments, support and ongoing care to adults, and children aged seven and over.

Explaining the rationale, Jonathan says: "We also run a private residential addiction and mental health service and we were seeing a lot of patients who were coming in with addiction issues who were unable on previous attempts to remain sober and remain in recovery. And on further investigation, it was predominantly due in some cases to them having underlying, undiagnosed, untreated ADHD. So that was part of my thinking around (the clinic). We had also become aware of the increasing wait times and wait lists within the NHS in South Yorkshire and across the UK.”

NHS waiting times for autism and ADHD assessments vary in different areas, with some children and adults facing several years after referral before being assessed and potentially given a diagnosis. Hannah Maguire, who lives in Portsmouth, says she was told it would be around a two or three-year wait for her seven-year-old son. Though a formal diagnosis is not a requirement for an Educational Health and Care Plan (EHCP), it can be beneficial for helping to identify children and young people’s needs and any additional support they may require.

Hannah’s son has struggled with emotions, social issues and low-self esteem for several years and has previously attempted to leave his school site. He was placed on a waiting list for assessment around 12 months ago, but during a period when he was struggling to cope with school life last November, Hannah began researching private clinics and her son is now undergoing ADHD and autism assessments with Montrose.

“It’s just not possible for so many parents to wait so long,” the 34-year-old says. “For us, having a diagnosis is about having an answer,” she continues. “It’s about enabling him to understand as well…He doesn’t understand why he’s different to his peers and why his friends can cope with school and he can’t.”

Asif Clay has also been going through the assessment process with Montrose, one of more than 200 people to have used the autism and ADHD service over the last nine months. The 50-year-old, who took part in a therapeutic residential programme at Montrose, was assessed whilst on site and given support to manage ADHD. "I needed to have this understanding about myself,” he says. Reflecting on NHS waiting times, he adds: “The NHS is there to help and making someone wait three years is not helping a person. They need to be assessed straight away.”

In January, Health Secretary Wes Streeting acknowledged the Government was failing to cope with the number of referrals for autism and ADHD. “We’re trying as a Government to understand what’s driving this increase,” he said in radio interviews. “Is it simply awareness – and a positive awareness – that means that people who would have just gone unsupported and undiagnosed are now realising that they may well have ADHD? And then secondly, meeting the demand because we’re really falling short on this in the NHS.”

In December last year, Mr Streeting announced he had launched an independent review into the rising demand for mental health, ADHD and autism services, which will look at rates of diagnosis and the support offered to people.

The Yorkshire Post contacted the Department of Health and Social Care for comment.