As ADHD Awareness Month approaches, I wanted to post something about ADHD Pathfinding. Here in England, access to ADHD assessment and long-term support is tricky and inconsistent at best. This is somewhat inevitable - the modern understanding of ADHD is evolving rapidly and the system was put in place to support something very different from the current position. However, this is still leaving millions of people (especially adults) undiagnosed and unable to access care or support[1], and costing the UK economy an estimated £17 billion per year[2] in lost productivity and wider social costs.
That is a huge number to throw about and, while the shock factor is significant, the actual cost is in the human implications. ADHD drives impulsive behaviour which can result in educational failure, long-term unemployment, crime, substance misuse, suicide, mental and physical illness (directly quoted from the ADHD Taskforce report). These behaviours ruin lives and break communities and with the right support, care and treatment much of this is preventable.
As I said above, the system is not designed to support the modern reality of ADHD. Assessment through the NHS can take years, and in some areas access to any kind of assessment for adults was nearly denied entirely to create capacity for children. Some commentators dismiss ADHD as a fad, and "everyone seems to have ADHD these days" but the research suggests it is actually chronically under-diagnosed. The current "trend" reflects people asking more questions because of growing awareness.
There are ways to move through the medical system, using Right to Choose schemes or indeed going private, but these require an unreasonable amount of knowledge of the NHS processes and mechanics to navigate. Add in that there is no specific requirement for GPs to have training in ADHD and you have an impenetrable system that can demand far too much of the patient. There is also a financial barrier to assessment and care - the private route is simply not open to many (if not most) people.
Under the hood, there are many, many problems. For just one example, ADHD medication is classified as a Schedule 2 restricted substance requiring monthly prescriptions (and thus time) from senior clinicians. However, ADHD is not classified as a chronic condition which means this administration burden does not come with any funding for the GP's office. Unlike heart medication, which also requires ongoing admin but GP practices are funded for the effort.
This is where ADHD Pathfinding comes in. We have come together to focus on the system, the context it was built in, and how it may change to be more effective in the modern world. We aim to raise awareness of these challenges and ultimately help bring ADHD into the NHS strategy where currently there is no mention of any kind of neurodiversity. The group was founded by Himal Mandalia, and at its core are people who have been in various forms of public service - so people who have experience getting things done in the highly bureaucratic government environment. We are also people who understand the challenges of the system. While I'm not going to rewrite our operating values here, I will highlight that we are looking to improve the system, not criticise the people working within it.
And yes, I said "we". I have been involved since the early days, lurking behind the scenes and helping formulate strategy. This is personal for me - this year, I have been diagnosed with both autism (not surprised) and ADHD (much more surprising). I can honestly say that if I hadn't had support from friends (especially Himal) I would not have got to the end of the ADHD process. I am very privileged to have knowledgeable friends, a pretty strong layman's knowledge of medicine, lots of experience navigating bureaucracy, and resources to help me do all this and I still would have given up. This is not right.
I'm going to write a post about my personal experiences coming to terms with this change in the near future, but for now I'll say I am very keen to help others walk an easier path.
If you're interested in ADHD or the system of assessment and care, please do reach out to us. We're building a community of people invested in this. We can build a system that supports everyone, but it is going to take effort and persistence to put it on the political map.
[1] According to ADHD UK
[2] ADHD Taskforce report part 1
