As it looks likely that more children will return to school at the beginning of June, it’s important not to forget the struggle that many families have faced throughout this period. Schoolchildren across the country have had to study at home in ways they haven’t had to before, with many parents having to balance their normal workload and having to homeschool their children for the first time. This won’t have impacted all families equally: some will have coped well, others will have found such an upheaval in education extremely challenging. Of particular concern are children with special educational needs, including undiagnosed conditions, who often need specialist help in classrooms to deal with their symptoms and focus on their learning.
Back in 2018, we highlighted the cost of one condition – ADHD – to individuals and society, and how not being diagnosed in childhood can lead to problems throughout adult life. We set out ways the government could address some of the challenges the condition presents in our report Your Attention Please.
You can read the report here, and the executive summary below.
Attention deficit hyperactivity disorder (ADHD) is a frequently stereotyped condition, but contrary to common misconceptions, ADHD does not only affect young boys, nor does it reflect a simple inability to behave. It is a chronic condition that affects people from all backgrounds and frequently persists into adulthood. Many people grow up with ADHD and become adults without ever being diagnosed, receiving little or no support; the true impact of this is not well understood from a research perspective.
At a time when mental health services are under the spotlight, the aim of this Demos report is to shine a light on the socioeconomic impact of undiagnosed and untreated ADHD on individuals, the people around them and wider society. We also sought to assess the evidence base for the impact of ADHD and to identify gaps.
Research for this project took place between August and October 2017. It consisted of:
- conducting a rapid evidence assessment (REA) of academic literature
- supplementary desk research
- holding interviews with people diagnosed with ADHD in adulthood
- examining written submissions from people diagnosed with ADHD in adulthood
- holding interviews with professional experts and stakeholders
What is ADHD?
ADHD is a neurodevelopmental disorder characterised by excessive activity, problems paying attention and problems controlling one’sbehaviour. It is one of the most common disorders of childhood and adolescence: estimated prevalence among 5–15-year-olds in the UK is 3.62 per cent of boys and 0.85 per cent of girls. (1) Although symptoms often improve, ADHD usually continues to affect people in adulthood.
ADHD cannot be cured. However, medication can be used to relieve the core symptoms, with stimulants being the most frequently prescribed type of medication. Non-pharmacological treatment, such as parent training, patient therapy and psychoeducation, can also have an important role in equipping people with the skills they need to control the impact of ADHD symptoms on their lives.
ADHD frequently co-occurs with other psychiatric conditions, such as depression, anxiety, conduct disorder and oppositional defiant disorder. The high comorbidity rate can make diagnosis and treatment of ADHD challenging.
In recent years, there has been a flurry of government activity in the mental health sphere. Reports such as Future in Mind and The Five Year Forward View for Mental Health have shone light on the failings of mental health services, particularly for children and young people, and sparked new programmes and initiatives aimed at their improvement. (2) Furthermore, no longer seen as just a matter for health professionals, mental health is increasingly becoming part of the remit of schools and teachers, too, with a number of initiatives aimed at improving joint working between the two sectors.
It remains to be seen how these developments will affect the everyday experience of people with ADHD. As things stand, children with ADHD are frequently unable to access Child and Adolescent Mental Health Services (CAMHS) as the challenges they face do not typically present as acutely as problems such as eating disorders and self-harm, and evidence suggests that knowledge of ADHD is poor among teachers. Furthermore, despite growing awareness among clinical and academic circles of the fact that ADHD frequently persists into adulthood, services for adults have yet to catch up, with specialist ADHD psychiatrists in significant demand and access to specialist ADHD clinics a postcode lottery. Without dedicated attention and investment, people with ADHD may feel little benefit from general developments in mental health policy.
There are significant gaps in the evidence concerning the socioeconomic impact of undiagnosed and untreated ADHD. Research into the impact of undiagnosed and untreated ADHD is challenging and remains in its infancy. Our research identified two particularly significant gaps in the existing evidence base:
- There are very few studies that monetise the impact of ADHD.
- Most studies explore the impacts of diagnosed and treated ADHD, rather than undiagnosed and untreated ADHD.
Despite the gaps in the evidence, it appears that undiagnosed and untreated ADHD imposes a significant socioeconomic burden. ADHD can have a far-reaching and pervasive effect across all areas of day today life. We found evidence of ADHD’s impact on daily routines, healthand wellbeing, education, work, personal relationships, risk-taking and crime.
The economic evidence taken together suggests that for a country of the UK’s size, the annual cost of ADHD could run into billions of pounds. Although most of the research focuses on the costs of diagnosed ADHD, it is likely that the costs of undiagnosed ADHD are higher.
Surprisingly, the evidence appears to suggest that most of the costs are associated with adults with the condition – not children – and that the impact on work could be the single biggest cost component.
Evidence suggests that adults with ADHD are less likely to be in full-time, paid work than those without the condition, and that their on-the-job productivity may also be reduced. This has implications for individuals, employers and the state, as a result of reduced tax-take and increased expenditure on welfare benefits.
Awareness and understanding of the condition is poor, inhibiting early diagnosis and intervention.
There is good reason to believe that early diagnosis and intervention could play an important role in helping people with ADHD to lead successful and fulfilling lives – but a good knowledge of ADHD is needed for this. Unfortunately, awareness and understanding of ADHD is currently very poor, and not just among the general public – evidence has shown that parents, teachers and healthcare professionals also frequently fail to grasp the basic facts of the condition.
People with ADHD can be creative, energetic and dynamic. But as things stand, too many people with the condition are going through life without receiving the diagnosis or support they need to be happy and fulfilled, and to make the most of their talents. Many people with the condition suffer immensely in all areas of their lives, including education, work, relationships and more, with implications for their friends and family, wider society and the public purse too.
Reducing the socioeconomic burden of ADHD will be a complex task. It will require change and joined up thinking across a number of different sectors and services, including health, education, employment and research – as reflected in our recommendations below. But the green paper on children’s mental health represents an important opportunity for the government to lead the charge. (3) Policy-makers must use the green paper as a springboard to implement a convincing and transformative strategy to ensure that people with ADHD are left behind no longer.
Recommendations for policy and practice
We make the following recommendations for policy-makers and practitioners:
- The government should work with people with ADHD and the media to develop an awareness-raising campaign, aiming to make ADHD visible to a wider audience and promote better public understanding of the condition.
- Mental Health First Aid (MHFA; https://mhfaengland.org/) should develop its government-sponsored schools programme to include advice on ADHD.
- Initial teacher training (ITT) providers should clearly focus on supporting children with ADHD in their programmes, in meeting the new requirement for special educational needs and disabilities (SEND) training to form a core part of all ITT courses from 2018.
- NHS England should work with clinical commissioning groups (CCGs) to ensure that they prioritise data collection and use as part of a drive to improve their commissioning of health services for people with ADHD.
- Health professionals treating children and young people with ADHD should work with other professionals (such as the proposed designated senior leads for mental health in schools) to create transition plans ahead of key changes in the individual’s life.
- Department for Work and Pensions (DWP) work coaches and employers should signpost people with ADHD to Access to Work.
Recommendations for research
We recommend that the following work is prioritised by researchers and research funders:
- Explore the difference made by early access to diagnosis and treatment to the long-term outcomes and costs of people with ADHD.
- Compare outcomes for adults with ADHD treated in general psychiatric clinics with outcomes for those treated in adult ADHD clinics.
- Explore under-researched social and economic impacts of ADHD.
- Separate the impacts of ADHD from the impacts of other psychiatric conditions that frequently co-occur with ADHD.
(1) T Ford, R Goodman and H Meltzer, ‘The British Child and Adolescent Mental Health Survey 1999: the prevalence of DSM-IV disorders’, Journal of the American Academy of Child & Adolescent Psychiatry 42, no 10 (2003).
(2) DoH, Future in Mind: Promoting, protecting and improving our children and young people’s mental health and wellbeing, Dept of Health and NHS England, 2015,https://www.gov.uk/government/uploads/system/uploads/attachment_ data/file/414024/Childrens_Mental_Health.pdf (accessed 18 Jan 2018); Mental Health Taskforce, The Five Year Forward View for Mental Health, 2016, https://www.england.nhs.uk/wp-content/uploads/2016/02/Mental- Health-Taskforce-FYFV-final.pdf (accessed 18 Jan 2018).
(3) Secretary of State for Health and Secretary of State for Education, Transforming Children and Young People’s Mental Health Provision: A green paper, Cm 9523, 2017, https://www.gov.uk/government/uploads/system/uploads/attachment_ data/file/664855/Transforming_children_and_young_people_s_mental_h ealth_provision.pdf (accessed 18 Jan 2018).