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🌿 What Is Patient-Priority Care in ALPIMS?
Patient-priority care puts the person, not just the diagnosis, at the center of all decisions. It considers:
- 🧠 What matters most to the person right now (e.g. energy stability, sensory safety, reduced symptom flares)
- 🎯 How they define quality of life (e.g. being able to cook, walk 10 mins, attend a support group)
- 🔄 How their goals change over time, and how care must flex with pacing needs
- 💬 How they want to be treated — including autonomy, communication style, trauma awareness, and consent
🧩 Especially important in ALPIMS, where symptoms are multisystemic, fluctuating, and often dismissed.
🌱 Core Components of Patient-Priority ALPIMS Care
| Domain | Priority-Based Adaptation |
|---|
| Access | Shorter, spaced appointments; telehealth; low-scent environments |
| Goals | Start with patient-defined goals: “I want to get through my workday without crashing” |
| Pacing | Recognize need for rest/recovery days; avoid intensive protocols |
| Language | Use collaborative, respectful language: “What do you notice works best for your body?” |
| Autonomy | Empower choices: test med/supplement changes slowly, support sensory comfort |
| Multidisciplinary | Avoid silos: physical, mental, and social needs are integrated into care planning |
| Values-aligned | Consider spiritual, cultural, gender, neurodivergent, or trauma history in all care approaches |
✅ Patient-Priority Pros and Cons by Healthcare Role
| Provider | Patient-Priority Benefits | Challenges or Gaps |
|---|
| GP (ALPIMS-aware) | Can build long-term relationship, track goals, coordinate slowly | Needs longer consults and holistic mindset |
| Specialist | May help confirm rare diagnoses or support eligibility (NDIS, DSP) | Often focused on pathology, not function; may ignore patient voice |
| Integrative Doctor | Can tailor treatments to patient goals and tolerances (e.g. low-dose protocols) | Expensive; protocols may be overwhelming without pacing |
| Occupational Therapist (ND-aware) | Adapts routines, tools, environments to what matters most to the patient | Can slip into “function over feeling” unless explicitly values-led |
| Dietitian (MCAS-aware) | Can help tailor safe, low-effort, enjoyable meals that improve function | Risk of overly prescriptive food plans if not sensory/ND-informed |
| Psychologist / Counsellor | Explores emotional priorities, grief, fear of flare, identity | May push talk-based models over bodily or pacing needs |
| Support Worker | Helps meet daily life goals like cooking, bathing, attending a hobby group | Effectiveness depends on training and relational safety |
| Allied Body Therapist | Gentle support of physical function in ways that match energy and sensitivity | Can push “improvement” over regulation unless carefully aligned |
🎯 Examples of Patient-Priority Goals in ALPIMS
| Goal | Aligned Healthcare Response |
|---|
| “I want to avoid crashing after my appointments.” | OT builds pre/post appointment recovery routine. GP uses spaced consults. |
| “I want to cook 3 times a week without flaring.” | Support worker assists with pacing; dietitian supports batch cooking; OT adapts kitchen tools. |
| “I want to feel emotionally safe during care.” | All providers trained in trauma- and ND-informed language. Patient sets session boundaries. |
| “I want my meds to help me function, not just sedate me.” | Psychiatrist uses low-dose trials with weekly check-ins; pharmacist sources MCAS-safe compounds. |
| “I want to be believed about how bad my flare days are.” | GP documents crashes and supports evidence for NDIS. OT tracks fatigue metrics collaboratively. |
⚖️ Patient-Priority Care: Pros and Cons
| Pros | Cons |
|---|
| ✅ Respects autonomy and lived experience | |
| ✅ Improves emotional safety, especially for ND or trauma-affected individuals | |
| ✅ Reduces medical trauma and improves long-term outcomes | |
| ✅ Aligns care to what actually improves life function | ❌ Requires longer, slower care — can be a barrier in underfunded systems |
| ❌ Not all providers are trained in this model | |
| ❌ Hard to coordinate without an advocate or care coordinator | |
| ❌ Family or systems may push back if goals don’t match mainstream recovery models | |
🧠 Supporting Patient-Priority Care in Practice
| Tool | How It Helps |
|---|
| Patient-priority goals worksheet | Clarifies what the person wants and can share with their team |
| Pacing & flare diary | Validates what worsens or supports function |
| Symptom impact scale (not just severity) | Focuses on how symptoms affect daily goals |
| Medical ally script | Helps ask: “How does this help me do what I care about more easily?” |
| NDIS goals map | Links personal goals to formal support language (e.g. “increase participation”) |
🧩 Ideal ALPIMS Patient-Priority Healthcare Plan Includes:
| Tier | Who/What | Role |
|---|
| Core | ALPIMS-aware GP + OT + psychologist + MCAS-aware dietitian | Build the rhythm, identify core symptoms + goals |
| Supportive | Support worker, body therapist, trauma-informed coach | Day-to-day function, pacing, and sensory support |
| Specialist | Rheumatologist, immunologist, cardiologist, psychiatrist | Specific diagnoses + tailored meds/tests |
| Environment | Sensory-safe clinic, pacing access, flexible formats (telehealth, text) | Reduces stress and flares in care settings |
| Tools | Zone check-ins, symptom logs, energy trackers, DBT tools | Help the patient self-monitor + communicate clearly |