Advocating in Hospitals & Nursing Homes

Being admitted to a hospital or moving into a nursing home can bring new challenges for anyone — and for people with ichthyosis, it can mean making sure your skin care needs are clearly understood and  met.
 
This guide helps you advocate for your care, educate healthcare providers, and stay comfortable and safe during your stay.

Why Advocacy Matters

Ichthyosis is rare, and many healthcare professionals may not be familiar with it. Your condition, daily routines, and skin needs may not be part of standard hospital or nursing home care.  By clearly explaining your needs and having a plan, you can help ensure  
• Your skin is properly moisturized and protected  
• Bathing routines are handled correctly  
• Medications and treatments are appropriate  
• Comfort and dignity are maintained throughout your stay

Before Admission or Move

1. Prepare a Personal Care Plan 
   • Write down key information about your skin and care routine  
     • Type of ichthyosis (if known)  
     • Daily skin care steps (bathing, products, moisturizers)  
     • Frequency and preferred timing (for example, “apply ointment twice a day”)
     • Allergies or sensitivities to products or medications  
     • Notes on temperature regulation or clothing preferences  
     • Keep a printed copy with you and provide one to your care team.  
2. Bring Your Own Products 
   • Hospitals and nursing homes may not have the specific products you use  
     • Pack your moisturizers, cleansers, and shampoo in labeled containers.  
     • Ask your doctor to include your products in your official care plan so staff can apply them.  
3. Identify an Advocate 
   • If possible, ask a family member or caregiver to serve as your advocate. They can help
     • Explain your condition to staff
     • Ensure daily care routines are followed
     • Speak up if something doesn’t feel right

During Your Stay

1. Educate Your Care Team
   • Introduce yourself and your condition. You might say
     • “I have a rare genetic skin condition called ichthyosis. My skin doesn’t shed normally, so I need daily moisturizing and gentle bathing to stay comfortable and avoid infection.”
   • Offer to share a short information sheet (FIRST can provide printable resources) or direct staff to the FIRST website.
2. Speak Up About Your Needs 
   • You have the right to request care that supports your health and comfort  
   • Communicate respectfully but clearly about  
     • The type and amount of moisturizer needed  
     • Frequency of bathing and skin care  
     • The importance of room temperature control (some people with ichthyosis can’t sweat normally)
     • Avoiding harsh soaps or scrubbing  
3. Monitor Your Skin 
   • Check daily for signs of  
     • Cracks or open areas  
     • Infection (redness, swelling, pain)  
     • Discomfort from dryness or tightness  
   • Alert staff right away if something changes.  
4. Prevent Complications 
   • Hospital environments can dry the skin due to air conditioning or low humidity  
     • Ask for a humidifier if allowed.  
     • Stay hydrated and keep moisturizer nearby.  
     • Wear loose, soft clothing to prevent irritation.

In Nursing Homes of Long-Term Care Settings

1. Establish Routine Care 
   • Make sure skin care is part of your daily care plan and charted by staff.  
   • Ask for consistency — ideally the same caregivers should help with bathing and moisturizing when  possible.  
2. Communicate Regularly 
   • Check in with the care team or charge nurse to ensure your skin care plan is being followed.  If you notice changes in your skin or comfort, bring them up promptly.  
3. Educate and Empower Staff 
   • Offer short, simple education  
   • “Regular moisturizing keeps my skin healthy and prevents infection. It’s not cosmetic — it’s medical  care.”  
   • Encourage caregivers to contact your dermatologist or FIRST if they have questions.

If You Face Challenges

If your skin care needs are not being met:
• Speak first to your nurse or caregiver  
• If unresolved, ask for the charge nurse or patient advocate  
• In hospitals, you can request a care plan meeting  
• In nursing homes, contact the director of nursing or ombudsman  
• Document concerns in writing if needed. 

Resources

Key Takeaway

You are the expert on your own skin.
 
By preparing ahead, communicating clearly, and advocating for yourself or your loved one, you can  ensure that your ichthyosis care is respected and supported – wherever you are.