On Monday night, the BBC’s Panorama aired its documentary Private ADHD Clinics Exposed, in which I participated. The reporter Rory Carson was able to receive three separate diagnoses of attention deficit hyperactivity disorder (ADHD) from clinics operating within the private sector. When I put him through a rigorous assessment in my NHS clinic, I found he fell short of the criteria to make a diagnosis.
The story has provoked heated debate. One camp is relieved that concerns about quality of care for those with ADHD are finally being exposed. In the face of logjammed NHS waiting lists, many patients who are looking for answers to their struggles simply have no other option than to pay out of their own pocket to see a private provider and, clearly, some are being let down.
There is obviously a need to deal with the way the market is currently organised and to improve things. But there has also been a huge emotional fallout from the show, which speaks to the polarising nature of the debate around ADHD – its validity, the stigma and how to effectively manage this very real condition, which has undergone a surge in awareness in recent years.
Understandably, many in the ADHD community feel that giving credence to any suggestions of an overdiagnosis problem within the private sector fuels the cynicism that has plagued this condition for decades. Since the documentary aired, I have heard from people concerned that GPs could now be more likely to question legitimate diagnoses. Others are questioning whether their own diagnosis is trustworthy.
But as an NHS psychiatrist it is clear to me that the root of this issue is not overdiagnosis. Instead, we are facing the combined challenges of remedying decades of underdiagnosis and NHS services that were set up when there was little awareness of ADHD.
At my service in Leeds, more than 3,000 patients are waiting to be seen. Those at the top of the list were referred in December 2020. Those at the bottom will face a wait of several more years. In some parts of the country, patients are waiting between five and 10 years. For clinicians, the long waiting list is a constant pressure to cut corners that we must resist to ensure we continue to offer safe and effective care.
As NHS waiting lists grow, more and more private providers are opening their doors to meet demand – and as the private landscape grows it becomes more difficult for regulators to scrutinise.
It’s crucial that we don’t enter into a binary “private sector is bad”, “NHS is good” debate. Private providers are bound by the same National Institute for Health and Care Excellence (Nice) guidelines as the NHS, and many offer good quality care. But the documentary provides a useful snapshot of how public money is being diverted from the NHS to a service that doesn’t always meet patients’ needs.
Part of the problem is that the Nice guidelines only go so far. They do not outline a minimum standard of training for those carrying out assessments, stating only that they must be done by an “appropriate, qualified practitioner”. Assessors who lack sufficient training or understanding in this field are more likely to misdiagnose symptoms, or to miss other relevant conditions.
When someone has an instinct that they have ADHD, they are often right. Anyone presenting to our services will have an issue that needs treating appropriately. But a full mental-health screening must be conducted to get the right diagnosis. Conditions such as autism, trauma or PTSD can sometimes look like ADHD, and about 80% of people with ADHD will also have another condition alongside it, such as anxiety, depression, bipolar disorder or psychosis.
ADHD has one of the most effective treatment options in all of psychiatry, but it’s not without some potential harms. You do not want to expose people to medication unless you have to, and certainly not without ruling out co-morbid mental-health conditions that could be aggravated by it.
How can we improve ADHD care and diagnosis? Assessors should be trained to an agreed minimum standard so the public can be assured that their assessment, whether through a private clinic or an NHS service, has been reliable and thorough. Having a system without checks and balances fuels stigma. The issues raised by Panorama could actually help address some of that cynicism if we take this opportunity to push for reform.
Another obvious solution would be to introduce a national target for ADHD waiting times, like the three-month assessment target for autism spectrum disorder services. In February, ADHD assessments were debated in parliament. The government recognised that many people are waiting too long, but pointed to Nice and the lack of guidance on waiting times. Meanwhile, when clinicians at a local level seek funding, they are told there’s nothing left in the pot. We need ringfenced funding to improve ADHD services.
ADHD is not becoming more prevalent and the fact that we are playing catch-up does not equate to an exponential increase. A tiny fraction of people in the UK take stimulant medication, the gold standard treatment – far fewer than the 2-4% of the adult population whom we know are likely to have the condition.
For people who truly have ADHD, it’s not a case of pulling up your socks – symptoms are present in multiple domains across a person’s life and can cause them major problems. In my clinic, I see people who are unable to hold down a job or relationship, but I also see patients who mask their symptoms expertly, including for example a female GP I recently saw who was able to function at work, but crashed as soon as she got home. Other high-functioning patients may appear to be managing well on the surface, but then have a breakdown because the cost to that individual of functioning well is so extremely high, which underlines how complex ADHD can be to identify and the need for expert assessment and care.
There are human and financial costs to not treating this condition effectively. We urgently need to improve ADHD services.
Dr Mike Smith is a consultant psychiatrist and the clinical lead of the Leeds NHS Adult ADHD service. As told to Lucy Pasha-Robinson
