Individual & Family Health Organiser: with download

This Individual & Family Health Organiser was originally developed to accompany my and Helen Edgar’s webinar ‘Neurodivergence and PANS/PANDAS’ and is now being used to support the webinar ‘When Eating is Hard: ARFID & the PDA Community’ for The PDA Space.

Purpose

This tool helps you collect and organise key family health information that may be relevant to your or your young person’s wellbeing. Many conditions (e.g., autoimmune issues, allergies, digestive concerns) can run in families, and sharing this context with health professionals can make it easier to get the right support. I also recognise that families are diverse, and it may feel complicated to gather or share this information. Please include what feels possible for you while respecting the privacy and wishes of relatives.

Image from Canva by Iridenta Florescu’s Images

You might also be interested in my other blogs such as “Information Gathering Templates: For PANS/PANDAS Conference 2025”, “When the Doctor Says “Let’s Wait and See…”, and ‘What Is Diagnostic Overshadowing and Why Does It Matter?’

How to Use This Document

• Keep it simple at first: You don’t need to complete every section immediately. Start with what you know and add details over time.
• Think across generations: Include information about parents, siblings, grandparents, and even extended family where it feels relevant.
• Note patterns, not just diagnoses: Fatigue, chronic pain, digestive issues, migraines, and sensitivities may be important even if they weren’t formally diagnosed.
• Update regularly: Health changes over time. Revisit this organiser every 6–12 months or when new information arises.
• Use it in appointments: Share a copy (or key sections) with healthcare professionals to add valuable context.
• Don’t worry about neatness: Rough notes are fine; the aim is to build a clearer picture, not a perfect document.

Tips for Individuals, Parents and Carers

• Keep the focus on patterns: Professionals often find it useful to see repeated issues across family members.
• Include both physical and mental health: Anxiety and depression can also run in families.
• Mark uncertainty: If you’re not sure (“Maybe my aunt had thyroid problems?”), note it down anyway, it may still be useful.
• Respect privacy: Only record what you feel comfortable sharing. You may want to keep one copy for yourself and a simplified version for professionals.

Areas to Consider

• Neurological (e.g., migraines, seizures, neurodivergence)
• Digestive (e.g., IBS, reflux, coeliac, food intolerances)
• Autoimmune (e.g., thyroid issues, arthritis, lupus)
• Musculoskeletal (e.g., hypermobility, joint pain, scoliosis)
• Allergies & Sensitivities (food, environmental, medication)
• Cardiovascular (e.g., fainting, heart conditions, blood pressure)
• Mental Health (e.g., anxiety, depression, OCD, bipolar)
• Other Patterns (e.g., chronic fatigue, skin conditions, pain, reactions to medications)
• Bladder (e.g., incontinence, frequent infections, urgency)
• Menstruation (e.g., painful periods, heavy bleeding, irregular cycles)
• Sleep (e.g., insomnia, sleep apnoea, restless legs, night terrors)
• Endocrine (e.g., diabetes, thyroid, hormonal conditions)
• Other Patterns (e.g., chronic fatigue, skin conditions, pain, reactions to medications)

You can download the Individual & Family Health Organiser here

Thank you for being here,

Laura Hellfeld

RN, MSN, PHN, CNL

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Disclaimer: The information shared in this blog is for informational purposes only and is not intended to replace medical advice, diagnosis, or treatment. Please consult a licensed healthcare provider for personalised support and care tailored to your specific needs.

Signposting and Resources

• Flush Forward!: A Friendly Toileting Guide for Parents Supporting Disabled and Neurodivergent Young People
• Creating Safe Spaces for Autistic People
• Gabby’s Glimmers: An Affirming Story of an Autistic Child and their Favourite Food
• Information Gathering Templates: For PANS/PANDAS Conference 2025, blog
• When the Doctor Says “Let’s Wait and See…, blog
• What Is Diagnostic Overshadowing and Why Does It Matter?, blog