The Parkinson’s Foundation Hospital Care Initiative aims to ensure that all people with Parkinson’s disease (PD) can trust that the hospital care they receive is of the highest quality. The initiative’s goal is to also ensure people with PD are heard, valued and respected as partners in their own care.
Understanding the Problem
- Each year in the U.S., nearly one-third of people with Parkinson’s will experience a hospital encounter.
- Stopping or poor administration of PD medications while hospitalized can lead to medical emergencies, dyskinesias and worsening symptoms.
- People with PD are at increased risk for in-hospital complications, especially:
- Infections and Delirium
- Surgical Complications
- People with PD have longer lengths of stay and spend more days in the hospital than those without PD
Hospitalization and ER visit costs are higher for people with Parkinson’s disease than those without PD.
- These costs are increasing. An average hospitalization cost of $25,491 in 2002 increased to $40,802 in 2011.
- Nation-wide, the estimated annual cost of hospital inpatient services for people with Parkinson’s is $7.19 billion. This is 28.4% of the total direct medical cost of PD.
Improving Hospital Care
People with Parkinson’s should feel heard, valued and respected as contributors to their own healthcare. The Parkinson’s Foundation Hospital Care Initiative addresses issues many people with PD face in the hospital, as well as the lack of substantial training and meaningful information about Parkinson’s disease in most medical education programs.
The Hospital Care Initiative leverages all Parkinson’s Foundation strengths and programs, incorporating professional education, research and clinical care.
Help People with Parkinson’s Get Better Care
As part of the Parkinson’s community, advocating for yourself or your loved one with PD in the hospital is critical. The Aware in Care hospital safety kit was designed to help you do just that.
Once you have received and prepared your kit, here are other things you can do to help advocate for better Parkinson’s care in the hospital.
- Bring your Aware in Care kit to your next neurology appointment and ask your neurologist to share the kit with their other PD patients.
- Print and bring the Parkinson’s Hospital Care Infographic to your next support group meeting and encourage everyone to order an Aware in Care kit.
- Apply to become an Aware in Care Ambassador, a Parkinson’s Foundation volunteer trained to advocate for better care during a hospital stay and distribute Aware in Care Hospital Safety kits into more communities and hospitals around the country.
- Share our Substantial Matters podcast interview with Rose about how she utilized the Aware in Care kit to inform and educate the hospital staff caring for her husband when he broke his hip.
- Encourage healthcare professionals in your life to visit Parkinson.org/HospitalCare to learn more.
Share Your Story
Terri Weymouth, an Aware in Care Ambassador in Indiana, was admitted to the hospital three times between 2014 and 2019. Each time she had problems getting her medication on time. Read about her experience in her My PD Story.
If you would like to share how Parkinson’s has affected your life (as someone living with PD, a care partner or family member) in the hospital, submit a My PD Story today.