How bad are the waits for adult ADHD assessments?

This topic has gained national prominence with the release of an BBC investigation, which claims that many areas of the UK have such long backlogs for adult ADHD assessments that it would take at least eight years to clear them.

According to the BBC investigation, based on Freedom of Information (FOI) requests, around half of services have long waits on that scale.  

The research, which focused on adults only, suggests there are at least 196,000 adults on waiting lists across the UK for ADHD treatment.

But how bad are the numbers really? And can we really tell with any certainty when the data quality surrounding mental health remains so poor?

What we can say with certainty is that, by any measure, the findings clearly show a huge mismatch between capacity and demand on ADHD assessments and treatment. And this is having a significant impact on people’s lives.  

Difficult to judge

Whilst the BBC’s findings are undeniably bad, the truth of the matter is that none of us are able to judge the real position because no data on these waiting times quoted anywhere is accurate (including that sourced directly from providers). It may be better, it may be worse, but we can’t know for sure.  

This is the fundamental problem – the reliability of the data doesn’t yet allow us to make any sound judgements, even if they do make for eye-catching headlines.

The reason these figures are not accurate, and therefore not reliable to construct metrics from, is that the community mental health services sector is still developing its approach to measuring wating times consistently and accurately. Steps are being taken to try and improve the situation - the government and the NHS ultimately want parity of esteem between physical and mental health, including the oversight measures used to monitor performance - but there is still a lot of work to be done before we can trust the numbers.

Additionally, whilst the data above focuses on waiting times to assessment, it’s crucial to note that this is only part of the picture. To understand the whole story, we have to look at the whole pathway.    

Getting the quality of the data right

Although the article states that data on how long people are waiting to be assessed for ADHD is not currently centrally recorded, this is not strictly true. It is not yet in the public domain, but NHS England has already begun collecting this data on community mental health services.

That said, it is also true that many ADHD services (especially for Children & Young People) are delivered by Community trusts and are thus arbitrarily excluded from the new figures. For these services, it can quite literally a postcode lottery as to whether a pathway happens to be commissioned from one trust or another and, as such, whether the waiting times have the same prominence.

Either way, the issue is not necessarily that’s it not being recorded, but that the quality of data is not high enough to use for any management of performance or improvement. The bottom line is that not all providers can yet accurately record how many are waiting, how long they have been waiting or how many assessments have been completed. If you don’t know the numbers you are dealing with, how can you hope to truly manage or deal with the problem?  

What’s more, the poor quality of the data means that the exact extent of the gap – and therefore the extra capacity that would be needed – cannot be costed, making the right investment more difficult to secure.

Currently, as the best endeavours data the BBC collected shows, the picture is hugely variable, with both numbers on waiting lists and numbers of assessments completed varying to the degree that they are incomparable.  

Even where they do manage this, the definitions of what constitutes (in this case) someone waiting for ADHD assessment, when they started on the waiting list and when an assessment should be considered complete is not consistent between providers. In other words, providers are simply not counting this activity in the same way and so any comparisons mean little.

As we noted above, work is ongoing to resolve this. NHS England has set an ambition to measure the waiting times between referral and treatment or getting help, as well as methods to standardise the counting and measuring of the statistics themselves. This work is, for now, some distance from completion.  

A deeper challenge

Unfortunately, the challenge doesn’t end there. We’ve so far been talking about the difficulties in measuring waits to (and generating enough capacity for) an initial assessment, but this is not the end of the clinical pathway.  

Even once a diagnosis is made, currently, the onward journey for service users is similarly opaque. The ability to measure subsequent access and waiting times also needs to be significantly progressed in the same way as an initial assessment before we can be confident in how long people are waiting to get help.  

As the generic ADHD pathway below shows, the waiting list for an assessment is only part of the story. Accessing appointments for medical and/or psychological help, plus the sometimes complex drug/therapy optimisation aftercare also needs the same attention.  

Of course, what the BBC article does serve to remind us of is the stories of those struggling to be assessed in a timely manner. Services are struggling, but until we know accurately who is waiting where and for what, it becomes much more difficult to tackle and manage it well.

Acumentice are working with community mental health services providers to understand and enhance their systems and processes and better position themselves for tackling these issues. We have developed a detailed understanding of the requirements and challenges and are ready to support the transformation to tracking pathway waits to a service user level.  

‍