While many with ADHD lead happy, healthy, and successful lives, there is mounting evidence that undiagnosed and untreated, the impact on physical and mental health can be devastating. An enhanced understanding of this and the likelihood of a greater role for primary care in treatment will inevitably impact on pharmacists who will increasingly be called upon for advice and guidance by patients. Dr Tony Lloyd, CEO of the ADHD Foundation, tells us more.

A wider acceptance and understanding of ADHD has resulted in increasing numbers of children and adults seeking a diagnosis and a doubling of prescriptions for ADHD medications in the past decade.

The global prevalence of ADHD is 5.26 per cent, yet in the UK it remains underdiagnosed at 2.9 per cent, and under-medicated at 0.9 per cent. Diagnostic rates for Scotland, Wales and Northern Ireland are even lower at between one-and-two per cent.

Contrary to what many believe, ADHD is not a behavioural disorder. It’s an enduring myth that ADHD is a diagnosis given to children who are hyperactive or behave inappropriately. ADHD – like autism, dyspraxia, dyslexia, dysgraphia and dyscalculia – is a neurodevelopmental disorder, with researchers stating that there is a developmental delay throughout childhood of up to three years.

Like autism, we now know that the brains of those with ADHD are structurally and functionally different, and like autism, it is a lifespan condition. While many parts of the neurological delay are overcome once the brain reaches full maturity in early 20s, ADHD can still significantly impair quality of life. The World Federation for ADHD, based in Munich, has now published a free online guide for clinicians, and it’s also valuable for pharmacists in understanding the condition and the pharmacological interventions available. (1)

Access to healthcare, however, has remained a controversial issue, with waiting times of between one-and-five years to see a specialist in both child and adult services. A report published by a coalition of charities in 2017 was sent to every MP and every NHS commissioner in the UK highlighting the disparity of care in various parts of the UK. The report, ‘A Lifetime Lost, or a Lifetime Saved?’ sought to inform government and NHS commissioners of the impact of ADHD and raised the issue of whether stigma was influencing the lack of commissioned services when the scientific evidence was unequivocal. (2)

Undiagnosed and unmanaged ADHD correlates with a range of poor health outcomes, such as high blood pressure, stroke, obesity, anxiety, depression, bipolar disorder and addiction. Research due to be published this year cited significantly increased prevalence of self-harm and attempted suicide in the ADHD population. (3)

The impairment to cognitive functioning and learning increases the risk of academic underachievement and school failure which can lead to a lifetime of deprivation and dependency, which was highlighted in the DEMOS report published in 2018 highlighting the social and economic impact of ADHD. (4)

ADHD is genetic in origin, with approximately 20 per cent of cases acquired through brain injury, epilepsy or severe sleep deprivation in early infancy. More recent research suggests that preterm births increase the risk of a range of neurodevelopmental disorders by up to 17 per cent which may account for some of the increase in those diagnosed in childhood over the past two decades. (5)

The improvements in identifying, diagnosing and treating ADHD in children, however, has not met with increased capacity in adult services and the report published by the ADHD Foundation, ‘Will the Doctor See me Now?’ in July 2019, cites Freedom of Information data that proves that lack of data on prevalence and comorbidity and a lack of forward planning has resulted in many children ceasing access to healthcare at a critical juncture of their lives when transitioning from education to employment in adulthood.

With increasing demands on healthcare budgets, NHS England is exploring a national strategy for the care of those with ADHD that will sit alongside the National Autism Strategy, outlined in the 10-Year Long-Term Plan. Several ideas are currently being explored, such as a greater role for the diagnosis and treatment of ADHD in primary care, with specialist nurse prescribers playing a greater role to ease the pressure on GPs. More complex cases with comorbidity – a frequent occurrence for adults seeking a late diagnosis – will likely remain in secondary care and specialist psychiatry until they are proven to be responding well to treatment and stabilised, at which point they will transition to primary care. A public health campaign is also being called for by patient groups and charities to reduce the stigma that may prevent some people from accessing healthcare and potentially being misdiagnosed with anxiety, depression, and bipolar disorder. It will be 2020 before any plans are made public, however, patient groups in Scotland, Wales and Northern Ireland are concerned that no such discussions are taking place in the devolved assemblies about how patient care for ADHD will be addressed and whether they will follow NHS England’s lead.

A major source of controversy is that many health boards and clinicians in both primary and secondary care are not adhering to NHS guidelines on treatment for ADHD. Guidelines state clearly that treatment should be multi-modal, including programmes for parents on understanding and supporting their child’s ADHD, psycho-social and psycho-educative guidance on self-care and self-management for adults and when needed, psychological therapies such as CBT. NHS guidelines of ADHD medications can be found on www.pathways.nice.org.uk/pathways/attention-deficit-hyperactivity-disorder/medication-for-adhd.

Achieving Better Care

In most parts of the UK, medication is the first and often only line of treatment. With an effect size of 0.8, methylphenidate is one of the most effective compounds available, with numerous research studies demonstrating that early diagnosis and treatment significantly improves long-term mental and physical health. The coalition of ADHD patient charities has produced an accessible report for patients on NHS guidelines, a copy of which should be readily available in every pharmacy. (6)

The necessary changes to achieve better care requires a systemic approach to ensuring that the interplay between genetic heritability and environmental factors are optimised. Short-term and siloed budgets have made it difficult to build a case for ADHD services as the benefits are considerably more impactful across the entirety of statutory services for health, education and social care. A systemic approach begins with educating parents and indeed expectant parents, so that they understand the risk factors associated with familial neurodevelopmental conditions, preterm births and how parenting and early life trauma, such as adverse childhood experiences, can exacerbate the genetic potential and severity of ADHD presentation.

ADHD in Education

Training for school teachers is considered by many to be inadequate to ensure accurate identification and early intervention. The Department for Education states that currently 14.6 per cent of the school age population have some form of learning impairment, and as many as two-in-five of those with a learning impairment are not identified until after age 16.

At the ADHD Foundation, over 50 per cent of referrals for children received from schools for assessment don’t prove positive for ADHD, resulting in unnecessary costs and increasing waiting times. The imperative for a referral from schools is usually because the child’s behaviour is considered inappropriate for a classroom setting.

Yet many teachers remain unaware that acute anxiety is the main cause of inappropriate behaviour and that pervasive ‘learner anxiety’ can be countered with effective teaching strategies to accommodate neurodiverse learners, such as those with ADHD, autism, dyspraxia, dyscalculia and dyspraxia. Symptom overlap and the estimated 40 per cent-plus comorbidity across the neurodevelopmental spectrum of course makes this difficult for teachers. The ADHD Foundation trains over 12,000 teachers and over 3,000 healthcare professionals every year and has produced a booklet specifically for school nurses and GP practice nurses so that they can better advise parents and schools on how to accurately identify and support children and their families which may also be of use to pharmacists when asked for advice and guidance by patients. (7)

The emerging trend in education, and especially in industry, of a ‘21st Century neurodiverse paradigm’ also influences the current debate on healthcare and indeed those who believe that labelling children is pathologising, what are in fact natural variations and diversity of human brains. This is particularly so of ADHD which historically has been criticised and discredited as an invention of the pharmaceutical industry.

Fortunately, the conversation and science has moved on considerably. ADHD is prevalent in one-in-20 of the population; autism affects one-in-100; and dyslexia is estimated to affect between one-in-five, and one-in-10 individuals. From an evolutionary perspective, if as many as one-fifth of humans are neurodiverse, should we be challenging the medical model that classifies them as errors of genetics or ‘disordered’? What remains clear is that public perceptions and our educational paradigm of intelligence, ability and employability are being scrutinised, debated and challenged. Major growth industries, such as robotics, technology and creative industries, are actively recruiting neurodiverse employees because they are ‘creative, innovative thinkers’.

This change led by Microsoft, Apple and Google has now crossed over to finance and commerce. Within medicine and education, however, not much has changed in how we classify the one-in-five who are neurodiverse and whether this is simply a question of language and medical terminology or indeed a fundamental shift to a more strength-based approach.

The coalition of UK charities, together with leading academics and clinicians, initiated and led by the ADHD Foundation, psychiatrist Dr Phil Asherson of King’s College London, and United Kingdom adult ADHD Network and clinical psychologist, Dr Susan Young, will publish a peer reviewed consensus statement in 2019 calling on the government to act in response to the overwhelming evidence on ADHD.

References

1. https://www.adhdfoundation.org.uk/wp-content/uploads/2019/06/The-World-Fedaration-of-ADHD-Guide-2019.pdf

2. https://www.adhdfoundation.org.uk/2017/11/03/a-lifetime-lost-or-a-lifetime-saved/

3. Association between suicidal spectrum behaviours and Attention-Deficit/Hyperactivity Disorder: A systematic review and meta-analysis, Authors: Mathilde Septier, Coline Stordeur, Junhua Zhang, Richard Delorme, Samuele Cortese PII: S0149-7634(18)30941-2 DOI: https://doi.org/10.1016/j.neubiorev.2019.05.022 Reference: NBR 3431

4. https://www.adhdfoundation.org.uk/2018/02/22/the-social-and-economic-impact-of-adhd/

5. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3572580/

6. https://www.adhdfoundation.org.uk/wp-content/uploads/2019/02/ADHD-NICE-Guidelines-Patient-Booklet.pdf

7. https://www.adhdfoundation.org.uk/wp-content/uploads/2018/11/Attention-Deficit-Hyperactivity-Disorder-Information-for-Nurse-led-ADHD-Clinics-and-School-Nurses.pdf