Hi everyone,
As some might know, I’m a parent of a child with a genetic condition, autism, and potentially other undiagnosed developmental differences. I’ve found the 11.20–11.29 Physical Health section of the Johnny.Decimal system incredibly useful, but I needed to make some key adaptations to reflect how healthcare works here in the UK (NHS-based), and the kind of documentation I receive as a carer.
The original setup is excellent, but it leans toward a more medicalised model — great for managing regular healthcare, but not quite enough when you’re dealing with complex, ongoing conditions. In reality, NHS letters often:
• Don’t just give a diagnosis, but include developmental history and next steps
• Are cumulative, with each letter building on the last
• Come from a wide mix of community paediatrics, CAMHS, OT, SALT, etc., all feeding into the same long-term picture
And as a carer, I needed a clear home for:
• The strategies and learning I’m researching myself
• Parent-led documentation and meeting prep
• Advocacy work (DLA, EHCP, complaints, etc.)
Johnny never said this system would cover everything for everyone, especially not those of us dealing with the mess and complexity of disability and care. So here’s my attempt at adjusting it to fit that reality with
my 2 new IDs.
Two New IDs I Created:
11.36 – Neurodivergent Profiles & Reports
This is the core home for multi-disciplinary reports and functional documentation around neurodivergence.
Includes:
• Neuroprofiling
• Speech and Language Therapy (SALT) reports
• Sensory processing profiles from OT
• Emotional regulation plans
• Functional assessments that feed into EHCPs or care plans
• Communication passports, behaviour plans, and needs summaries
This helps me keep the support picture of my child clear and cohesive, separate from formal diagnosis letters or GP notes.
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11.37 – Carer Learning, Advocacy & Notes
This is where I hold my voice as a parent — and all the invisible admin that comes with navigating a (very broken) system, advocating for your child, and trying to stay informed and emotionally afloat.
Includes:
• Research and information on diagnosis and co-occurring traits
• parenting courses or specific courses related to the child’s need as well as books and workshops
• Notes from webinars, SENDIASS, social workers
• DLA and Carer’s Allowance application notes
• Complaint letters (a lot of complaints…)
• Meeting prep notes, questions, and checklists
• Templates for EHCP replies or professional communication
• Reflections on what’s working and what isn’t at home
This is now my thinking and advocacy space — a structured way to manage the chaos and reclaim a bit of control. It’s where I plan, learn, and prepare to keep showing up for my child.
If anyone else is navigating complex medical, disability, or neurodivergent needs — especially within the NHS or similar systems — I am sorry, it’s hard. I’d love to hear how you’ve adapted the Johnny.Decimal system, or even what your struggles might be so we can help.
There’s so much invisible work that goes into advocacy, paperwork, and just holding it all together, and it doesn’t always fit into neat admin boxes. If you’ve found ways to make your system work for emotional, educational, or long-term care realities, I’d really value learning from your experience too.
Let’s build something that works for the lives we’re actually living — not just the neat ones.
