Advocating for Your Care 
in the Hospital

When you are in the hospital, whether your hospital visit is planned or urgent, make sure these vital steps are never left out. Here is how to get the most from your care team.

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Be Vocal

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• Request a consultation with a neurologist (preferably your neurologist): Provide the neurologist with a copy of your Medication Form and discuss your medical condition. Make sure the neurologist is consulted on all medication and treatment decisions during your entire hospital stay.

• Ask your PD neurologist to contact the doctor in charge of your care in the hospital: He or she should provide detailed information about your medical condition and medications.

• Share your knowledge about PD with the nurse(s) and doctor(s) in charge of your care during your stay: Make sure your doctors and nurses know what medications to avoid helping to prevent adverse reactions.

• Each time you are asked about medications you take, provide a copy of your Medication Form. You may have to supply this information multiple times - so have many copies on hand. Although this can be frustrating, it is critical that you hand it to each person that asks for a complete list of your medications. Also explain to every new person you meet that you need your medications delivered on time, every time, to control your Parkinson's symptoms.

• If you brought your medications with you in their original bottles to the hospital, let your nurses and doctors know: Ask if all of your medications are available in the hospital pharmacy. If not, find out what the hospital's policy is for using your own supply during your hospital stay. Some hospitals will allow this.

• Be persistent: It can be difficult to let others know what you need, but its critical to give clear direction upon your arrival. Talk with the nurses and doctors who are taking care of you in the hospital about your symptoms and how you feel.

• If the length of your hospital stay is longer than one day, you will probably encounter new staff each day: Assume each person you meet has little experience with PD and likely does not understand your symptoms, the importance of getting you your medications on time, every time or the medications you should avoid.

• Direct nurses and care teams to Help: If your care team has questions you can't answer, let them know that there is a Parkinson's Helpline that can be called at 1.800.4PD.INFO (473.4363).

• Take action if your needs aren't being heard or met: Ask your care partner to help and ask to speak to the nurse in charge of the unit or floor to explain to him or her that you have PD. Share your symptoms. Ask nurses to come back 30 minutes after giving you your medication to understand your symptoms. Call your Parkinson's doctor as an extra advocate, and if all else fails, ask to see the hospital's patient advocate or patient representative department if available.

• Dietary constrictions: Just as important as your medication is your diet - try to stay on a similar eating plan if possible, as at home. Communicate with nurses and therapists about the importance of medication absorption 30 minutes prior to a meal - and if you can, wait to eat even if they bring you the tray until your medication has had a chance to absorb.

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Get Moving

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• Soon after your medical procedure, it is vital that you get out of bed and start moving, if possible: Even if you are unable to get out of bed, there are exercises you can do that will help speed your recovery.

• You should ask for physical, occupational, or speech therapy, depending on your symptoms and needs: During your stay, take the opportunity to have an experienced professional show you how to build your physical skills and strength. Ask your doctor if you qualify to receive physical therapy at home after you are discharged - especially if getting outside of the home will be difficult upon discharge.

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Stay on Top of Your Care

It is essential to pay attention to the medications, treatments, and tests you get throughout your stay.

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• Never agree to any treatment that you are not certain about. Talk openly about all concerns. If you have DBS, be sure you tell your care team and technicians that there are specific protocols that need to be followed.

• Know which medications are safe. Before taking any medications, double check the list found HERE. If you have questions, ask to speak to your doctor. In fact, have copies of the Medications to Avoid or Use with Caution resource with you to give to your medical team while hospitalized.

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Follow Up and Provide Feedback

• Contact your Parkinson's doctor and your primary care physician and give them a progress report. If possible, fax or mail them a copy of your discharge instructions.

• Find out what follow-up care you will need and what things you can do at home to help control and improve your condition. Based on your situation, ask whether you could benefit from medication equipment or additional care such as physical therapy or home care, if these have not already been set up by the hospital.

Disclaimer: At PAA, our desire is to be a GO TO Resource for everything you need for the Parkinson's diagnosis to live a quality life with PD. We want to make sure you have all resources you need as you plan your journey with Parkinson's now and into the future so that you can reflect and discern what decisions you want to make with the appropriate insights to help you choose and build a plan that is unique as your journey. The PAA, nor the contents on this website, should never be a replacement for professional expertise and guidance from medical, legal, or financial professionals. Our goal is to equip you for those conversations. As such, the PAA cannot be held accountable for your choices and outcomes while navigating your Parkinson's condition.

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Sources:

Parkinson's Foundation. Hospital action Plan. Aware in Care. "Aware in Care Kit Brochure."

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