Long waits for ADHD diagnosis and treatment are a patient safety issue

Summary

Attention deficit hyperactivity disorder (ADHD) is a condition that affects people's behaviour. It has a wide range of symptoms and can affect both children and adults—people with ADHD may find it hard to focus on or complete tasks, feel restless or impatient, experience impulsiveness and find it hard to organise their time and their things.[1] ADHD can have devastating mental health implications and research studies have linked ADHD to increased suicide and mortality rates. This means that being unable to access effective treatment can be a patient safety risk for people with ADHD.

In this blog, Lotty Tizzard, Patient Safety Learning’s Content and Engagement Manager, explores the state of ADHD diagnosis and treatment in the UK. She looks at why many are concerned about the waiting times for adults and children seeking an ADHD assessment and speaks to Elsa*, who was diagnosed with ADHD in her 30s, about her experiences.

*Name changed

Content

ADHD affects a significant number of people in the UK—The National Institute for Health and Care Excellence (NICE) cites research estimating that 5% of children and 3-4% of adults in the UK have ADHD.[2] Most people with ADHD never receive a diagnosis, but over the past few years, an increasing number of adults and children have sought help from the NHS for ADHD. However, for many, long waiting lists have delayed their diagnosis and treatment by several years.

Living with ADHD can have a profound effect on people’s lives, with symptoms causing stress in relationships, work and finance. Elsa, who was diagnosed with ADHD as an adult in 2021, said, “Before I was diagnosed, I felt like I was rubbish at life. Knowing there's a name for the way my brain works has helped my self-esteem and helped me find strategies to deal with my symptoms.”

ADHD petitions and parliamentary debate

In February 2023, MPs held a Westminster Hall debate in response to two petitions that highlighted the issues of long waiting lists for diagnosis and treatment for ADHD and autism in the UK.**[3] During the debate, MPs discussed the issues caused by these long waits, including the mental health impacts on adults and children with undiagnosed ADHD. 

In her response to the debate, Maria Caulfield MP, Minister for Mental Health and the Women’s Health Strategy, acknowledged a number of these issues and the need for improvements in assessment services, stating, "I am the first to admit that we are not where we want to be, and that there is a lot of work to be done.”[4]

Why has ADHD diagnosis increased?

Various factors have been suggested as reasons for the increasing number of people seeking ADHD diagnosis[5] in recent years.

• One potential reason is greater awareness about ADHD and its possible treatments amongst the general public, with various high profile celebrities seeking to break the stigma around the condition by sharing their stories of diagnosis. This may have led to more adults asking whether their symptoms might be due to ADHD.[6]
• Greater awareness amongst parents and teachers has also led to more children being referred for assessment[7][8] and more applications for Education, Health and Care plans (EHCPs)[9], which set out a child or young person's special educational needs and the support they require.
• The Covid-19 lockdowns were shown to have a greater impact on the mental health and wellbeing of children [10][11] and adults [12] with ADHD than the general population. This may also have contributed to the increase in both adults and children seeking ADHD assessment.[13]
• There are also questions about whether environmental factors have led to an increase in incidence, and further research is needed to determine whether things like increased screen use, exposure during pregnancy to certain substances or pesticides used in food production, might be causing more people to develop ADHD.[14]

It has also been suggested that the recent high profile of ADHD has led to overdiagnosis.[15] However, experts on the condition urge caution around this assumption as population estimates suggest the majority of people with ADHD remain undiagnosed. They are keen to stress the importance of seeking help if you suspect you have ADHD traits.[16]

Current access and waiting times for ADHD assessment

Lack of national data makes it very hard to determine the number of people waiting for an ADHD assessment, an issue repeatedly raised in the Westminster Hall debate. Elliot Colburn MP initially highlighted this, saying:

“I asked about national data on assessment waiting times and the number of individuals diagnosed. The answer I got was, quite simply, 'We don’t know'—or, at least, the NHS and the Government do not know.”[4]

As the debate progressed, a number of MPs talked about the situation in their local area and read accounts of constituents who had been waiting many years for an ADHD assessment.

One reason given for long waiting times is that the UK has a lack of ADHD specialists. Dr Ulrich Müller-Sedgwick, a consultant psychiatrist recently told The Guardian that “The NHS simply doesn’t have enough clinicians with appropriate training, experience and time to deliver good quality clinical work”[5] in the field of ADHD.

The impact of health inequalities

There are a number of health inequalities at play, and the Westminster Hall debate highlighted that there is a ‘postcode lottery’ when it comes to ADHD diagnosis and treatment, with waiting times varying significantly depending on where you live. One MP highlighted that some areas in the UK have no adult ADHD service at all, and many others have waits of five years-plus.[4]

In addition, women and girls can find it harder to get an ADHD diagnosis due to the different symptoms they tend to display—they do not always present with ‘classic’ signs of ADHD,[17] but that does not mean the impact on their lives is any less significant. Lack of knowledge about these differences amongst healthcare professionals is a key factor exacerbating this inequity of access. Elsa described her experience when she eventually saw a psychiatrist. “When I finally got an appointment after two years, the psychiatrist told me I couldn’t have ADHD because I was wearing the right clothes for the weather and could make eye contact. I was told I was ‘just comparing myself to other women’. When I went back to the service and asked for a second opinion, I ended up seeing the same doctor again!

Another issue Elsa raised is the lack of clear information on the NHS process. “I wasn’t given accurate information about what to expect. I knew the waiting list could be very long, but in my initial NHS assessment I was told I’d be referred straight to an ADHD clinic, which didn’t happen.” 

People with ADHD may have additional barriers to overcome to access services, so it’s particularly important that the process of diagnosis is made as accessible as possible. In order to be seen by the right services, Elsa describes how “you really have to advocate for yourself. For a lot of people who have ADHD, executive function is a challenge. So organising appointments and remembering to chase things up can be a big struggle.” 

Issues with private ADHD clinics

These long waits for NHS treatment are driving some patients to pay for private assessments, and as the demand for assessment increases and outstrips NHS capacity, the NHS is also paying private companies to diagnose and treat ADHD. This is the route Elsa eventually took after finding out via a Facebook group about ‘right to choose’ on the NHS, and asking her GP to refer her privately. She was seen about six months later and given a diagnosis of ADHD.

This approach is helping many people to access assessment more quickly. However, a recent Panorama investigation raised some concerns about the depth and rigour of private assessments, with some patients being diagnosed and prescribed medication over Zoom in a matter of minutes. Patients and healthcare professionals interviewed by Panorama voiced concerns that private assessments felt like a ‘tick box exercise’ compared with more thorough assessments carried out in NHS clinics which—the programme stated—last around 3.5 hours. One mental health nurse felt the process at the private ADHD assessment service she had previously worked for was “unsafe.”[18] People with ADHD have responded to the programme on social media, highlighting that it does nothing to address the issue of lack of capacity within the NHS. Some concerns have also been raised about the programme’s approach to this investigation and its methodology.[19][20]

Patient safety implications of ADHD diagnosis and treatment delays

Waiting years for ADHD assessment and diagnosis can have significant implications for patient safety. Without a diagnosis, people may not receive the support they need, and research shows that the mental health impacts can have serious consequences. Undiagnosed ADHD has been shown to lead to low self-esteem, depression, anxiety and a higher likelihood of turning to substance misuse,[21] and people with ADHD are five times more likely to have attempted suicide than the general population.[22] If ADHD is misdiagnosed due to low quality or unreliable assessment practices, it raises a serious patient safety concern that people may be prescribed strong medications that they don’t need, sometimes for years. ADHD medications can have serious side effects and can worsen mental health conditions such as psychosis, if they are not appropriately prescribed and monitored.

A 2015 study found that people with ADHD also have a higher mortality rate than the general population. The researchers found that people who receive a diagnosis in adulthood have an even higher mortality rate ratio than people who receive a correct ADHD diagnosis in childhood.[23]

Getting an accurate diagnosis and appropriate treatment can be life-changing for people with ADHD. Elsa described the positive impact ADHD medication has had on her life: “I’ve been able to come off my long-term antidepressant as I’m on the right medication now—one which actually helps. It has quieted my brain and I am much more able to focus on tasks and conversations. Instead of lots of ‘tabs’ being open in my mind at the same time, I can just have one.” Dr Rob Baskind, a Consultant Psychiatrist highlighted in a recent Forbes article that, “Medication can be an extremely effective intervention alongside other environmental interventions and psychological support, to significantly reduce the deficits ADHD manifests whilst allowing the individual to maximise their strengths.”[24]

What can be done to improve waiting times for ADHD assessment?

The first step in dealing with the huge demand for ADHD diagnosis is to understand the extent of the problem. At the moment, there is no mandated national data collection, so establishing the number of people waiting for assessment is impossible. If the NHS were to adopt routine reporting processes, it would allow for a more strategic approach to tackling waiting times and inequalities in diagnosis and treatment.

ADHD services are in need of sustained investment in specialist training for healthcare professionals working with people with ADHD, as well as a focus on improving access to therapy. Elsa told me her medication is recommended to be taken alongside therapy. “But I can’t access therapy on the NHS, which is very frustrating.”

One approach to reducing waiting times suggested by a 2022 research study involves equipping primary care to effectively diagnose and support people with ADHD.[25] If GPs were less likely to misdiagnose ADHD as other conditions, people would be more able to access appropriate treatment. However, there are risks associated with this approach, and adequate planning and safety-netting would need to be in place to ensure patient safety. 

The Panorama investigation also raises questions about how ADHD services are regulated.[18] Where ADHD assessments are not provided directly by the NHS, patients need assurance that they will still be carried out with the same level of rigour and quality. It is important to ensure that all assessments and treatment decisions follow guidelines issued by the National Institute of Heath and Care Excellence (NICE) and are carried out by appropriately trained professionals.

One recent positive development was the Government’s publication of its Special Educational Needs and Disabilities (SEND) and Alternative Provision (AP) Improvement Plan [26] in March 2023, which will benefit children with ADHD. If implemented effectively, the plan should improve waiting times for diagnosis and access to specialist support for children in education.

Providing early intervention and support for children and adults with ADHD is better for everyone. As well as improving mental health outcomes for individuals, it reduces the pressure on mental health services, reducing the likelihood of people developing issues that require crisis treatment.

**Although people waiting for autism diagnosis face similar barriers, this blog will focus on ADHD diagnosis.

Get involved

• Do you or your child have ADHD?
• Are you on a waiting list for ADHD diagnosis or treatment?
• Are you a healthcare professional that works with people with ADHD?

We’d love you to share your experiences with us by:

• Commenting below (you’ll need to sign up for free to become a hub member).
• Contributing to our community conversation about ADHD waiting times.
• Getting in touch with the hub team to share your experience.

Related reading

ADHD services ‘swamped’, say experts as more UK women seek diagnosis

References

1 Attention deficit hyperactivity disorder (ADHD). NHS England, 21 December 2021
2 Attention deficit hyperactivity disorder: How common is it? National Institute for Health and Care Excellence, November 2022
3 E-petition debate relating to assessments for autism and ADHD. House of Commons Library, 2 February 2023
4 Volume 727: Autism and ADHD assessments debate. UK Parliament, 6 February 2023
5 Topping A. ADHD services ‘swamped’, say experts as more UK women seek diagnosis. The Guardian, 13 January 2023
6 15 celebrities describe what it's like living with ADHD. Cosmopolitan, 25 November 2021
7 Huang H, Ougrin D. Impact of the COVID-19 pandemic on child and adolescent mental health services. BJPsych Open, 5 August 2021
8 Oldman I. Bury CAMHS sees huge increase in children referred. Bury Times, 25 July 2022
9 Education, health and care plans. UK Government website, 12 May 2022
10 Davoody S, Goeschl S, Dolatshahi M et al. Relation between ADHD and COVID-19: A narrative review to guide advancing clinical research and therapy. Iran J Psychology, 2022; 17(1): 110–117
11 Shah R, Venkatesh Raju V, Sharma A et al. Impact of COVID-19 and lockdown on children with ADHD and their families—an online survey and a continuity care model. J Neurosci Rural Pract, 2021; 12(1): 71–79
12 Hollingdale J, Adamo N, Tierney K. Impact of COVID-19 for people living and working with ADHD: A brief review of the literature. AIMS Pubic Health. 2021; 8(4): 581–597
13 Joiner A. Is ADHD overdiagnosed in the UK? Focus on Adult ADHD website, last accessed 15 May 2023
14 Is there an increase in ADHD? Children and Adults with Attention-Deficit/Hyperactivity Disorder website, 11 July 2021
15 Herndon J. What we know about ADHD overdiagnosis. Healthline, 21 September 2021
16 Colombo C. ADHD isn’t ‘overdiagnosed’ – quite the opposite, actually. Independent, 25 November 2022
17 Kok F, Groen Y, Fuermaier A et al. The female side of pharmacotherapy for ADHD—A systematic literature review. PLOS One, 18 September 2022
18 Panorama: Private ADHD clinics exposed. BBC, 15 May 2023
19 Bloodworth J. ADHD – the truth about is misdiagnosis, 16 May 2023
20 Response to BBC Panorama “Private ADHD Clinics Exposed”. ADHD Foundation, 15 May 2023
21 Iavarone K. What to know about untreated ADHD in adults. Medical News Today, 9 February 2023
22 New study to understand the relationship between ADHD and suicide risk. University of Glasgow website, 27 September 2022
23 Dalsgaard  S, Østergaard S, Leckman J et al. Mortality in children, adolescents, and adults with attention deficit hyperactivity disorder: a nationwide cohort study. Lancet. 2015;30;385(9983):2190-6
24 Doyle N. ADHD crisis in the UK: Under diagnosed, lacking support and stigmatized. Forbes, 14 January 2022
25 Asherson P, Leaver L, Adamou M et al. Mainstreaming adult ADHD into primary care in the UK: guidance, practice, and best practice recommendations. BMC Psychiatry, 11 October 2022
26 Special Educational Needs and Disabilities (SEND) and Alternative Provision (AP) Improvement Plan. HM Government, March 2023.