Such a missed opportunity……a television programme coverage of ADHD diagnosis

The BBC Panorama show ran a programme last night about private ADHD diagnosis. Numerous people have provided excellent overviews of the many reporting issues with this programme – see for example @ADHD Foundation and @garwboy on Twitter.

As an ADHD researcher who specifically recruits participants for research who are on waiting lists to better understand and support their needs, I have considerable concerns about the impact of this programme. We know that NHS waiting lists for ADHD and similar neurodevelopmental difficulties such as autism are long and they are getting longer. Some people are waiting up to 4 years for assessment on the NHS. Research shows many of those awaiting diagnosis have thinking, learning and mental health difficulties. No wonder there is now a growing market for private assessment.

This was such a missed opportunity to highlight good – as well as – questionable diagnostic services. Instead, there was a narrative of an NHS Gold Standard service pitched against several private clinics whose services were all critiqued. The NHS waiting lists are 3 years in many areas and even longer in some parts of the UK. How did the reporter get access to that place? It seems they were offered a place without waiting that others do not have the luxury of getting. It looks like he got an assessment place because it was known he was in a reporting role but this was not disclosed to the private clinics.

All of the stories of those who accessed private services on the programme were negative. You only have to take a quick look at Twitter today and you will hear the voices of many parents of children and adults who have accessed private services and how they are very content with the services they received. Many reporting the services they accessed were much more thorough than those portrayed on the programme and involved developmental histories for example. For these people the diagnosis is often liberating enabling them to finally put the pieces of a jigsaw together and understand themselves. Or understand their child in the case of a parent and help the child to understand themselves in a world that is set up for those who are neurotypical. Research shows that children and adults understanding their strengths and difficulties associated with an ADHD or related diagnoses is really important for successful outcomes.      

The focus of the programme was almost exclusively on ADHD diagnosis being a pathway to receiving stimulant medication.  This went along with a narrative of why diagnoses were high in these clinics – the person diagnosed would then go on to pay for a monthly prescription. Diagnosis is far more than about accessing medication. Receiving a diagnosis is really important for identity. For many diagnosis is a pathway to becoming part of the ‘ADHD community’ (or other neurodivergent community) and getting the understanding and support they need to thrive.  

This was an opportunity to highlight any difficulties found in particular private practices and point to examples of good practice such as taking a full and thorough developmental history and corroborative information. We do not know at this point the proportion of inaccurate / unreliable diagnoses coming out of clinics in the UK and this is important to ascertain. In the meantime NHS waiting lists are getting longer and longer and the private sector are helping to cover what the NHS does not have capacity for. That context was really missing.

The programme ended with a statement of the scandal of these private services. The real scandal is that the NHS lists are so long people have no choice but to access services privately. Now they will likely be faced with questioning of whether their diagnosis is valid. This is a really harmful situation to be in – not just in relation to medication but the bigger picture of the diagnosis helping with personal understanding and identity.