Understanding the unmet needs of individuals with ADHD

Dr Jo Perkins, a chartered coaching and counselling psychologist, discusses some of the key challenges associated with ADHD and the steps needed to improve awareness and patient care

Attention deficit hyperactivity disorder (ADHD) is a neurobehavioral disorder often associated with symptoms including inattentiveness, hyperactivity, and impulsiveness. Though the condition is more commonly diagnosed at an early age, ADHD may not be recognised or diagnosed until adulthood.

According to the 2021 World Federation of ADHD International Consensus Statement, most cases of ADHD are caused by the combined effects of genetic and environmental factors and, if left untreated, can lead to many adverse outcomes. Given the increase in ADHD awareness and demands for diagnoses in recent years, we spoke to Dr Jo Perkins, a chartered coaching and counselling psychologist, about some of the challenges associated with ADHD diagnosis, management, and support.

What are the key challenges currently facing the diagnosis, management, and treatment of ADHD?

The biggest challenge is a consistent nationwide approach to access for assessment and early diagnosis. There is no cure for ADHD, but diagnosis is the gateway to a range of options that help symptom management and reduce barriers to learning and performance in education and work settings.

Current waiting times to get an ADHD diagnosis on the NHS vary depending on the area and can be within six months, but more commonly, it can take a few years for children and adults. The process can be stressful, time consuming and delays access to educational and work-related support, reasonable adjustments, and treatment. All of which can have a significant impact on symptom management, mental health, inclusion, academic progress, and performance.

Long waiting times lead many who can afford it to seek private assessment. Finding a reputable ADHD specialist is not always straightforward, and it is also expensive.

The cost for the assessment, medication, and monthly psychiatrist appointment fees for the 8–12-week medication titration period (if medication is trialled) can be around £1500. This creates inequality as it is a route inaccessible for most people, which is compounded considering there is often more than one family member requiring assessment.

A key challenge with private assessment is whether the NHS GP will accept the diagnosis. When private diagnosis is not accepted by the patient’s GP, access to a Shared Care arrangement is not possible. This is where GPs share care with the treating psychiatrist, the GP prescribes the monthly medication via the NHS, and the psychiatrist meets the patient for six monthly reviews. Without a shared care agreement, costs for medication are not covered by the NHS, and the patient needs to get a monthly private prescription from the treating psychiatrist.

ADHD management options include support and reasonable adjustments in education and workplace settings, alongside psychological tools and techniques to minimise symptoms and their impact on day-to-day functioning. A diagnosis is required to access support and reasonable adjustments at school and in the workplace.

At school, this can include extra time in exams, sitting exams in a quiet room, and access to learning support and materials. In work, it can include flexible working hours, access to noise-cancelling headphones, quiet rooms for focused work and access to coaching programmes to develop strategies. Without support and adjustments, people with ADHD encounter numerous barriers on a daily basis, which can put them at a significant disadvantage.

How can ADHD impact a person’s daily life? What secondary conditions are associated with ADHD?

ADHD impacts a person’s daily life in a range of ways that impact on academic inclusion, performance and progress, relationships, finances, and physical and mental health.

No two people will experience ADHD in the same way, but symptoms are due to impairments in the parts of the brain responsible for executive functioning skills, so the impact will be across the following areas:

• Emotional regulation
• Verbal and non-verbal working memory
• Organisation skills – time management, planning and problem-solving
  Prioritisation
• Paying attention
• Self-direction
• Impulse-control.

Individuals with challenges in these areas encounter educational and social barriers and stigma, which can cause isolation, low self-esteem and confidence.

People with ADHD have a higher prevalence than those without ADHD to experience the secondary conditions of insomnia, OCD, anxiety and substance misuse. All of which can be managed more effectively with the right awareness, support management techniques and treatment.

How could public policy be updated to improve ADHD awareness, diagnosis, and treatment?

Improving ADHD awareness, diagnosis, and treatment in the UK requires a comprehensive approach that involves policy changes, education, and increased resources. Here are some strategies that can be considered for updating public policy in the UK:

• Education and awareness campaigns – to raise public awareness of ADHD, its symptoms, the importance of early diagnosis, treatment and management options
• Specialist training for education and healthcare professional
•  Improved access to assessment and diagnosis
•  Integrated care pathways for a seamless transition from child to adult services
• Improved access to medication, therapies and coaching
• Development of national guidelines for assessment, diagnosis and treatment of ADHD
• Research funding to help improve and develop evidence-based guidelines for ADHD management
• Support programmes within educational settings to better support students and teachers so that students with ADHD can thrive
• Support for families – information, links to resources, workshops, advocacy, counselling and peer support groups.

Implementation of these strategies can ultimately lead to improvement in the wellbeing and quality of life for individuals with ADHD and their families over the course of their lives.