End ADHD Exploitation: Sign the Petition for a Public Inquiry!
Imagine if you had a health condition that almost killed you, which was constantly debated in public as to whether it's 'real' or not. I launched this petition last week calling for a Public Inquiry into pre and post diagnosis ADHD support, because action is urgently needed.
Here's what it can do:
What is a Public Inquiry?
An investigation convened by a government minister, which deals with issues of "public concern", such as the Grenfell Tower fire or the handling of the Covid 19 pandemic.
The function of an investigation, led by an independent Chairperson, is to answer:
What's happened - what are the facts?
What's the cause - and who can do something about it?
What lessons can be learned to change future practices?
Afterwards, the results are made available to the Government and the public via a written report.
Why is one needed about ADHD support?
As ADHD has only been recognised in adults by the NICE Guidelines since 2008, the number of adults seeking support for ADHD is said to have risen by 400%.
The NHS has 7 year waiting lists for assessments, with some boroughs simply refusing assessments them at all. North Yorkshire recently piloted a scheme where people were refused referrals unless they were in crisis mode, such as self-harming.
This leaves many people paying thousands for private assessments, which may not even be recognised by their GP. The recent BBC Panorama programme showed how the lack of universal standards for assessments, including with NHS-approved providers, can leave people questioning their diagnosis. It also led to some people losing their shared care agreements with the NHS, leaving them entirely without support.
Children and young people also face years long waiting lists, which restart once they reach age 18. With a 5 times higher risk of suicide for people with ADHD, providing support can literally be the difference between life and death.
Before, during, and after ADHD assessments, the majority of people do not have adequate support.
Is this of "public concern"?
Our politicians seem to think so, with MPs saying how this 'systemic failure' is a priority in a Parliamentary debate on waiting times last year. The Government committed to collecting data on ADHD at a national level, but their action remains unclear.
In the meantime, there's several national media pieces on ADHD questioning the validity of diagnosis being published extremely regularly. Every time this happens, hundreds of thousands of people are left questioning their diagnosis.
It also has a significant economic impact, with a 30% increase in discrimination tribunal cases relating to invisible disabilities in 1 year, as employers struggle to understand how to accommodate people without support.
This is of concern to everybody in our society: parents, schools, employers, children, the medical profession, adults, neurodivergent and non-neurodivergent people alike.
What can a Public Inquiry do for ADHD support?
Establishing an independent panel of experts to investigate why people are needlessly left without support for ADHD will help to solve the problems.
Instead of the Government attempting to stick plasters on the problem and limit access even further, they can improve non-medical means of support, which would likely be far more effective. The majority of people seeking assessments are likely to have researched ADHD heavily and simply have this confirmed via an assessment: so the question is, what next - or what else?
This looks like:
1) Pre diagnosis support
By providing mandatory neurodiversity training across the education and healthcare sectors, symptoms can be spotted and supported early on. This can have a crucial difference to long-term outcomes for children for example, who may be unaware they are neurodivergent.
In contrast, education can also be provided for people who are actively seeking support. This could include official information about ADHD (seeing as over 50% of ADHD content on TikTok has been found to be misleading), and signposting to support such as tailored peer groups, therapy and coaching.
This is particularly important, as neurotypical coaching (such as under the ICF which requires clients to 'bring the agenda'), doesn't always work for neurodivergent people - who by definition, think differently.
Information can also be provided for employers about their responsibilities, as legally, a formal diagnosis is not required for a person to be protected under the Equality Act. The Government's Access to Work scheme does not require a formal medical diagnosis (but does require a person to be in work), which could also be significantly improved with training and covering people who are not in work.
2) Assessments
A Public Inquiry could identify the bottleneck of years-long waiting lists for ADHD assessments within the NHS. As only 'Qualified Providers' can diagnose ADHD, they could establish a minimum standard or process to be followed, making this public so individuals understand what should be happening during these assessments.
For example, the BBC Panorama episode suggested 3 hour assessments are normal within the NHS, but this is highly unlikely to happen in reality. (Mine was 10 minutes long, following a private one!).
Training could also be proposed for the medical profession, and improvements to make general neurodiversity assessments more accessible. Anomalies such as psychiatrists having to assess ADHD and Autism separately (despite a 50%+ crossover), could be removed. It's unclear why only Qualified Providers can make these assessments, as opposed to other conditions such as depression, anxiety, and dyslexia.
Past data could be collected as part of this Inquiry, supporting the Government to fulfil its commitment to providing a national dashboard of ADHD data.
3) Post diagnosis support
Although the NICE Guidelines recommend people diagnosed with ADHD are provided with a 'holistic and comprehensive treatment plan', this is rarely the case in reality. As seen on the Panorama episode, medication is generally the 'automatic' next step after diagnosis - and often the only one offered at all. This is pretty much why I wrote ADHD: an A to Z
Being diagnosed with ADHD can be an extremely overwhelming and life-changing event, that it can be difficult for loved ones to truly understand. Accessing support to navigate the emotions involved, alongside huge changes such as taking medication, is incredibly important to ensure the diagnosis is actually helpful.
Sadly, this is rarely the case - my own therapy was withdrawn from the NHS (ironically because I had ADHD), and someone I know was told by a psychiatrist not to go to therapy during initial months of medication!
I was able to access NHS therapy for anxiety some months later, but as this was not tailored to the way my brain works, it was pretty unhelpful.
It was only when I had ADHD coaching from someone that understood my experiences and helped me to navigate them that things truly changed. An Inquiry could help make this the norm, instead of something neurodivergent people have to figure out how to access themselves, such as by waiting 6 months for support through Access to Work.
Further to this, the medication doesn't work for everybody, and can be extremely dangerous if taken without proper oversight - mine almost killed me at first. Following tritiation, people with ADHD have to jump through bureaucratic hoops to access this medication for the rest of their lives, as it's a 'Controlled Drug'. An Inquiry could establish why this is and suggest ways the entire process could be a little less degrading for neurodivergent people to access the support the need.
They could also establish economic factors of improved ADHD follow up support, such as by providing training to employers or individuals in finding employment that will enable them to thrive with their unique brain wiring. Identifying organisational training could also be especially helpful for students and teachers struggling to navigate ADHD at school.
Follow up support could also be identified for parents of neurodivergent children, who are usually left with little education or understanding of what to do next - and local authorities. For example, Education Health and Care Plans are commonly refused until tribunal, where 95% of decisions are in favour of parents.
A Public Inquiry into these issues would help to establish what's going wrong, and how it can be fixed. It's quite literally, a no brainer. The Government has said this is a priority for them, and now they should act on it.
The petition calling for a Public Inquiry needs 10,000 signatures for a Government response - right now, there's 700. There are over 10,000 people on this newsletter: every single person reading this can make that change happen.
It might just be me, but in the last few months, the neurodivergent community has felt more divided than ever before. There's a huge amount of internal politics and people arguing on the internet with each other, instead of focusing their attention on the collective issues they're all fighting for.
It makes this work even more exhausting than it already is. If you've ever found anything I've done remotely helpful or interesting, I would really appreciate it if you signed and shared this petition.