here's where to get help if you think you have adhd
As a new documentary causes controversy, experts weigh in on available support while you wait for a diagnosis
image Milad Fakurian via Unsplash
words Michele Theil
Last week, BBC Panorama released a documentary titled “Private ADHD Clinics Exposed”, which was met with concern and criticism from the online ADHD community as well as charities like ADHD Foundation, who said the documentary; “failed to capture the historic inequality of access to health services and lack of priority given to patients with ADHD.”
In order to understand some of the backlash to the programme, here’s what you need to know. The documentary showed a BBC journalist being diagnosed with ADHD three times by three different private clinics. All three clinics offered the undercover journalist a prescription for ADHD medication (methylphenidates, often sold under the brand name Ritalin, a form of stimulants which are considered a controlled substance in the UK).
However, an NHS psychiatrist, who knew that he was a journalist and had fast-tracked a more in-depth assessment than what was offered privately, found that the journalist didn’t meet the diagnostic criteria for the condition. The documentary was intended to expose what the BBC has described as “rushed and poor-quality assessments at some private clinics” and to point towards private practitioners who are not doing due diligence into delving into patients’ mental and physical health histories before prescribing medication.
What has the impact been?
Since the programme aired, a statement from the board of charity ADHD Aware has argued that it; “suggests there is an ADHD scandal and claimed that ADHD is being falsely diagnosed leading to over-diagnosis through private ADHD assessment companies in the UK.”
This concern has been echoed online and caused worry among people who do have ADHD, with a survey conducted by ADHD UK finding that 89% of respondents think the programme has already increased the stigma of ADHD since its broadcast and 79% believing it will have further negative impact in the future.
When approached for comment, a BBC spokesperson told woo: “Panorama made clear that ADHD is a recognised condition affecting many adults and it highlighted the long waits for assessment and treatment on the NHS in some areas.
“The programme is an investigation into the way some private clinics diagnose and prescribe ADHD medication following assessments conducted over online video calls,” they added.
“[The programme] highlighted the profound impact the condition can have on people’s lives, and we have taken great care to ensure the programme doesn’t stigmatise people who have ADHD. We encourage people to watch the documentary.”
The waiting list for ADHD assessment on the NHS can take up to seven years - for some, private diagnoses are the only option
ADHD is a complex and lifelong neurological condition, wherein an individual usually displays inattentive, impulsive, and hyperactive behaviours. You may have also heard the term “ADD” - a phrase which has been phased out of clinical use but was formerly used in place of “ADHD”.
People with ADHD are more likely to experience a mental health problem, such as depression, anxiety, antisocial behaviour, and addiction, and they can find it difficult to work, study, or live to their full potential. Symptoms of the condition, if untreated, can be debilitating for the person experiencing them.
Fortunately, information about the condition has increased over the past few years, meaning that more people are seeking out diagnoses and medical advice. This has led to a 67.5% corresponding increase in individuals who have a prescription for ADHD medication.
“In the last three years, because of a variety of factors, there’s more public awareness of ADHD. This has meant a number of people are suddenly realising that there is a reason they act or behave in a certain way and struggle with certain things so there’s been a massive increase in people asking to be referred,” Dr James Brown, co-founder of ADHDadultUK, a charity which aims to support adults with the condition, explains.
The sudden increase in people realising that they may have ADHD has, however, meant that already stretched public mental health services are struggling to meet demand: the NHS waiting list for an ADHD assessment can be up to seven years long. “The NHS was never set up for that influx and there aren't sufficient resources to get those waiting times down,” Brown adds.
For those who are dealing with ADHD symptoms, a years-long wait is simply too long. Brown estimates that between 2.5 and 5% of people in the UK have ADHD but a significant number – ”80 to 90%” – are not diagnosed because they are unable to access an assessment for the condition.
Research suggests that more than half of new adult ADHD diagnoses are given by private providers due to wait times and lack of capacity in the NHS. This includes Brown. “I got diagnosed privately in February 2021 because I was in such a bad place. I couldn’t wait five years to get help. A private diagnosis changed my life,” he says. “Imagine that you have ADHD and you’re struggling at work, at home, and in your relationships, but then you’re being told it’s going to be years before you can get help for it. It’s devastating.”
As such, private clinics are taking over this “unmet need”. Brown said that there are some clinics who may not be providing a good enough service and that those places should be challenged but the majority are simply helping people with ADHD to get the care they need. It’s important to keep in mind that private clinics are subject to guidelines set forth by the National Institute for Health and Care Excellence (NICE) just like the NHS.
“We are committed to reducing ADHD and autism diagnosis delays and improving access to support,” said a government spokesperson, in response to questions about waiting times.
“The National Institute for Health and Care Excellence (NICE) has clear guidelines on ADHD and autism diagnosis and treatment and Integrated Care Boards and NHS Trusts are responsible for commissioning services for autistic people and people with ADHD in line with these guidelines,” they continued.
They also pointed out that the NICE guidelines for ADHD diagnosis and management do not recommend a maximum waiting time standard from referral for an assessment of ADHD, nor do they set out a timeframe within which treatment for ADHD should be provided
However, there is hope, with the spokesperson stating that; “In a recent Westminster Hall debate on 1 February 2023, the Parliamentary Under Secretary of State at the Department of Health and Social Care committed to look at how we can improve data on ADHD assessment waiting times, to help improve access to ADHD assessments in a timely way and in line with the NICE guideline.”
Public mental health services are overstretched
But for many, a private ADHD assessment is also out of reach. While some can access NHS-funded private diagnoses via the Right To Choose scheme, this isn’t available outside of England and not all people know it exists.
When self-funding, a private consultation like this can cost between £685 and £1600 depending on the provider, creating a huge financial barrier for those from lower income backgrounds.
For every person who is lucky enough to have the means to access support from the private sector, there are others who have no option but to shoulder the years-long waiting lists without access to formal support or life-changing medication in the interim. This unequal system, in a country which should have free health services for all, is the real scandal.
Henry Shelford, co-founder and CEO of the charity ADHD UK, believes that ADHD in the UK has traditionally been under-diagnosed and that further resources are urgently needed. “There is a misguided notion among many that the spike in ADHD diagnoses is a fad but the reality is that we’ve had an enormous level of under-diagnosis in this country. People’s lives are being destroyed because they aren’t getting the support they need and we need to fix that by investing further in those services.”
Similarly, Brown thinks we need to be focussing on the real issue: pushing for reinvestment in public services. “It’s an easier story to write to demonise private ADHD clinics rather than looking at how the NHS is not supporting a vast group of people who need support.”
What to do if you’re struggling to get an ADHD diagnosis
As with all health conditions, the first port of call if you believe you may have ADHD is to book an appointment with your GP to discuss your symptoms and how they are impacting your day-to-day life.
However, waiting times for a formal diagnosis on the NHS are long, whereas private diagnoses are expensive. But that doesn’t mean that there aren’t resources out there to help you.
For example, both Brown and Shelford’s charities actively support those who believe they have ADHD, regardless of a formal diagnosis and can answer personalised questions about the process behind a diagnosis.
“Our charity website has lots of resources on its website. The ADHD Foundation and ADHD UK also have excellent resources. You can find information from how to self test your symptoms, how to get support at work, and how to access a diagnosis on all three,” Brown explains.
Additionally, as NHS waiting lists are so long, many people have sought diagnoses using the Right to Choose scheme, which allows patients to ask for a referral from their GP to a specific ADHD assessment provider like Psychiatry UK for long-term care. These are free consultations provided by external, private clinics and funded by the NHS - some of which are among the clinics critiqued by the Panorama documentary for potentially providing inadequate ADHD assessments for patients.
There are restrictions on who the provider is, as they must have a commissioning contract with a specific NHS clinical commissioning group (CCG) or NHS England for that service and the service must be led by a consultant or a mental healthcare professional. Right to Choose is only available in England, however, and there is currently no equivalent in other parts of the UK.
People who have ADHD can also find informal support in online communities on Twitter, Facebook, TikTok and Reddit, where users often share their own coping mechanisms and advice in the absence of a formal diagnosis, counselling, and medication.
It’s important to keep in mind that the content you see on social media often isn’t medically reviewed, so shouldn’t be taken in the place of professional advice, though it can provide valuable insight into people’s individual struggles and coping mechanisms.
If you suspect that you are struggling with a mental health condition, you should book an appointment with your GP to discuss potential treatment plans. Anyone looking for shorter mental health support or to explore available information can contact the Mind infoline on 0300 123 3393.
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