A safety plan is a personalized list of strategies to use during difficult moments. It's developed in advance, kept accessible, and reviewed regularly. For people living with Alström Syndrome and their families — where mental health risks are elevated — a safety plan is preventive medicine.
This template is adapted from the Stanley-Brown Safety Plan, the most evidence-based suicide-prevention tool, with adjustments for the realities of Alström. It can be used by:
- Adults living with Alström who experience anxiety, depression, or suicidal thoughts
- Adolescents adjusting to vision loss or the broader medical situation
- Caregivers managing chronic stress and burnout
- Family members supporting an affected person
If you or someone you love is in immediate danger right now, skip the planning and call:
- 988 (US) — call or text
- Samaritans 116 123 (UK)
- Crisis Text Line — text HOME to 741741 (US/UK/Canada)
- Or local emergency services
How safety plans work
When mental health is in crisis, the prefrontal cortex — the part of the brain that solves problems — can be impaired. A safety plan provides external structure: a series of steps to follow when thinking is impaired.
The plan moves through six stages:
1. Recognize warning signs
2. Internal coping strategies
3. Social distraction
4. People who can help
5. Professionals and agencies
6. Making the environment safer
Each stage adds support. If one isn't enough, move to the next.
SAFETY PLAN TEMPLATE
Print and fill this in for yourself or with the person you're supporting. Keep accessible — phone, wallet, refrigerator. Review every 6 months and after any crisis.
═══════════════════════════════════════════════════════════════
MENTAL HEALTH SAFETY PLAN
═══════════════════════════════════════════════════════════════
Name: __________________________________________________
Date prepared: _________________________________________
Last reviewed: _________________________________________
Next review: ___________________________________________
═══════════════════════════════════════════════════════════════
STEP 1 — WARNING SIGNS
These are the early warning signs that I'm starting to
struggle. When I notice these, I'll move to my safety plan.
Thoughts:
─────────────────────────────────────────────────────────
Example: "What's the point?" / "I can't do this."
Mine:
• _______________________________________________________
• _______________________________________________________
• _______________________________________________________
Feelings:
─────────────────────────────────────────────────────────
Example: hopelessness, exhaustion, irritability
Mine:
• _______________________________________________________
• _______________________________________________________
Behaviors:
─────────────────────────────────────────────────────────
Example: pulling away from people, sleeping too much,
skipping meals, drinking more
Mine:
• _______________________________________________________
• _______________________________________________________
Body sensations:
─────────────────────────────────────────────────────────
Example: tight chest, racing heart, heaviness, headaches
Mine:
• _______________________________________________________
• _______________________________________________________
Specific situations / triggers:
─────────────────────────────────────────────────────────
Example: bad medical news, vision loss progress, hospital
visit, anniversaries, isolated days
Mine:
• _______________________________________________________
• _______________________________________________________
═══════════════════════════════════════════════════════════════
STEP 2 — INTERNAL COPING STRATEGIES
Things I can do on my own to feel better. Don't require
anyone else.
Try at least 2-3 from this list when warning signs appear:
─────────────────────────────────────────────────────────
• _______________________________________________________
• _______________________________________________________
• _______________________________________________________
• _______________________________________________________
• _______________________________________________________
Examples to consider:
☐ Listen to music / favorite playlist
☐ Audiobook / podcast
☐ Bath or shower
☐ Stretch or do gentle movement
☐ Breathing exercises (4-4-4 or 4-7-8)
☐ Tactile activities — soft fabric, textured objects, clay
☐ Cooking or baking
☐ Spend time with pet
☐ Pray / meditate
☐ Journal (audio or written)
☐ Watch / listen to favorite comedy
☐ Yoga or stretching
☐ Walk (with a guide if needed)
═══════════════════════════════════════════════════════════════
STEP 3 — PEOPLE AND PLACES THAT PROVIDE DISTRACTION
These don't require talking about the hard stuff.
They give your mind a break.
People I can see / call for company (not crisis support):
─────────────────────────────────────────────────────────
• Name: _________________________ Phone: ________________
• Name: _________________________ Phone: ________________
• Name: _________________________ Phone: ________________
Places that calm me down:
─────────────────────────────────────────────────────────
• _______________________________________________________
• _______________________________________________________
• _______________________________________________________
Online communities or activities:
─────────────────────────────────────────────────────────
• _______________________________________________________
• _______________________________________________________
═══════════════════════════════════════════════════════════════
STEP 4 — PEOPLE I CAN ASK FOR HELP
When I need to talk about how I'm feeling and what's going
on, these are the people I can reach out to.
Friends and family members:
─────────────────────────────────────────────────────────
• Name: _________________________ Phone: ________________
Relationship: ___________________________________________
Best times: _____________________________________________
• Name: _________________________ Phone: ________________
Relationship: ___________________________________________
Best times: _____________________________________________
• Name: _________________________ Phone: ________________
Relationship: ___________________________________________
Best times: _____________________________________________
Patient organization peer mentors / support:
─────────────────────────────────────────────────────────
• Alström Syndrome International — (___) ________________
• Alström Syndrome UK — (___) ___________________________
• Specific peer mentor: __________________________________
═══════════════════════════════════════════════════════════════
STEP 5 — PROFESSIONAL HELP
When friends and family aren't enough, or when the
situation is more serious, professional help.
My mental health provider (therapist / counselor):
─────────────────────────────────────────────────────────
Name: _________________________________________________
Phone: ________________________________________________
Hours: ________________________________________________
After-hours protocol: _________________________________
My psychiatrist / prescriber (if applicable):
─────────────────────────────────────────────────────────
Name: _________________________________________________
Phone: ________________________________________________
Primary care physician:
─────────────────────────────────────────────────────────
Name: _________________________________________________
Phone: ________________________________________________
Crisis support — available 24/7:
─────────────────────────────────────────────────────────
• 988 Suicide & Crisis Lifeline (US) — call or text 988
• Samaritans (UK) — 116 123
• Crisis Text Line — text HOME to 741741
• Local crisis hotline: _______________________________
• Local mobile crisis team: ___________________________
Hospital emergency department:
─────────────────────────────────────────────────────────
Name: _________________________________________________
Address: _____________________________________________
Phone: _________________________________________________
Travel time: __________________________________________
═══════════════════════════════════════════════════════════════
STEP 6 — MAKING THE ENVIRONMENT SAFER
These are steps to remove or reduce access to means of
self-harm during high-risk periods.
Items to secure / remove during difficult periods:
─────────────────────────────────────────────────────────
☐ Firearms (give to trusted person, gun safe outside home)
☐ Medications (give to trusted person, secured cabinet)
Medications of particular concern: _____________________
☐ Alcohol
☐ Other items: ___________________________________________
Person who'll temporarily hold these items if needed:
Name: _________________________________________________
Phone: ________________________________________________
═══════════════════════════════════════════════════════════════
REASONS FOR LIVING
When the hard moments come, these are the reasons I want
to keep going. Specific to me.
─────────────────────────────────────────────────────────
1. _______________________________________________________
2. _______________________________________________________
3. _______________________________________________________
4. _______________________________________________________
5. _______________________________________________________
═══════════════════════════════════════════════════════════════
SIGNATURES
Person: ___________________________ Date: _____________
(Optional) Therapist: _______________ Date: _____________
(Optional) Trusted family: ___________ Date: _____________
═══════════════════════════════════════════════════════════════Specific considerations for Alström-related mental health
Some patterns to be especially aware of:
Vision-loss adjustment
The late-teen and young-adult vision-loss adjustment period is a particularly high-risk window. Mental health support during this period is preventive, not reactive. The 2020 international consensus guidelines specifically recommend a low threshold for referral.¹
Caregiver-specific patterns
Parents — especially mothers — show particularly high rates of stress, anxiety, and depression in rare-disease families.² The caregiver safety plan matters as much as the patient's.
Multi-system illness fatigue
The cumulative weight of multiple medical issues, surveillance burden, and uncertainty wears people down differently from a single condition. Burnout has its own pattern.
Isolation
Rare disease can feel deeply isolating. Patient organizations are essential for combating this. Connection is not optional in Alström care.
Mortality awareness
Adolescents and adults with Alström become aware of life expectancy considerations. This awareness can trigger anxiety, depression, or existential distress. Therapy with a counselor experienced in chronic illness or end-of-life topics helps.
A separate plan for caregivers
If you're the parent or partner of someone with Alström, your safety plan matters. Use the template above, with these adjustments:
Common warning signs in caregivers
- Persistent fatigue not relieved by sleep
- Irritability or angry outbursts
- Difficulty concentrating
- Withdrawal from friends
- Increased alcohol use
- Resentful thoughts toward the affected family member
- Intrusive thoughts about running away or wishing the family member was gone
- Suicidal thoughts
Caregiver-specific coping strategies
- Respite care — even one evening helps
- Couples / family therapy
- Caregiver support groups (online or in-person)
- Self-care that's not optional (sleep, eating, basic medical care)
- Periodic time out of the medical orbit
When caregivers are at risk
The same crisis resources apply. Don't wait to be in crisis to seek help.
How to talk to your medical provider about a safety plan
Many medical providers don't proactively discuss safety planning. You can bring it up:
- "I'd like to put together a safety plan for [me / my child / my family]. Can we talk about it?"
- "Can you help me identify my warning signs?"
- "Who can I call if I'm in crisis between visits?"
A safety plan should ideally be co-developed with a mental health provider, but a self-developed plan is also valuable.
When to update the safety plan
- Every 6 months as a routine review
- After any major medical event
- After any mental-health crisis
- After significant life changes (graduation, transition, loss)
- After any vision or hearing change
- After medication changes affecting mood
- After a hospitalization
Updating means revisiting all six steps and updating contacts, strategies, and reasons for living based on what's accurate now.
Bringing the safety plan into your life
A safety plan only works if you use it. To make that more likely:
- Keep a copy in 2-3 accessible places (phone, wallet, refrigerator, bedside table)
- Tell at least one trusted person where it is
- Practice the steps when not in crisis (preview them)
- Use the warning-signs section even for "yellow" days, not just emergencies
- Update over time
- Don't be embarrassed by it — most people benefit from this kind of structure
Frequently Asked Questions
Is having a safety plan a sign that something's wrong?
No. A safety plan is a healthy preparation tool, like having a fire-evacuation plan. It's not evidence of crisis; it's preparation.
Should children have safety plans?
Older children and teens benefit from safety plans, especially in late adolescence when vision loss and identity formation create real mental-health risks. Adapt the language to the child's age and abilities.
What if I don't have someone to be my "trusted person"?
The patient organizations (ASI, ASUK) can connect you with peer support. Crisis lines (988, Samaritans) are always available. Therapists provide structure when family/friend networks are limited.
Will having a safety plan affect my insurance?
In the US, GINA and HIPAA protect health information. Your safety plan is private and doesn't go into your medical record unless you choose to share it.
Can I make a safety plan for someone else?
You can help someone make their own. Plans work best when the person owns them. For an unwilling person, you can prepare your own response plan for how to support them.
Related reading
- Mental Health and Wellbeing in Alström Syndrome
- Caregiver Burnout in Alström Syndrome Families
- Adjusting to Vision Loss as an Adult With Alström
- The Teenage Years With Alström Syndrome
- Protecting Your Marriage After a Rare Disease Diagnosis
Crisis resources (memorize these or save in your phone)
United States:
- 988 Suicide & Crisis Lifeline — call or text 988 (24/7)
- Crisis Text Line — text HOME to 741741
- Veterans Crisis Line — 988 then press 1, or text 838255
- Trans Lifeline — 877-565-8860
- Trevor Project (LGBTQ+ youth) — 1-866-488-7386 or text START to 678-678
United Kingdom:
- Samaritans — 116 123 (24/7)
- Shout — text SHOUT to 85258
- CALM (men's mental health) — 0800 58 58 58
- NHS 111 — 111 (option 2 for mental health)
International:
- International Association for Suicide Prevention — directory at iasp.info/resources/Crisis_Centres
- Most countries have national crisis lines
References
1. Tahani N, et al. Consensus clinical management guidelines for Alström syndrome. Orphanet J Rare Dis. 2020;15(1):253.
2. Rare Disease UK. Living with a rare condition: the effect on mental health. 2022.
3. Stanley B, Brown GK. Safety planning intervention. Cogn Behav Pract. 2012.
This template is for informational purposes only and is not a substitute for professional mental health care. If you are in crisis, contact 988 (US), Samaritans 116 123 (UK), or your local crisis line immediately. A safety plan works best when developed with a mental health professional.