What to do if you end up in the emergency room and you have Parkinson's?
Emergency department visits and hospitalizations are very common in Parkinson’s and more than half of persons with Parkinson’s (PWP) will find themselves in a hospital or emergency department each year. We spoke to Prof Jay Banerjee to get some insights and tips. Additionally, we have worked for many years with the Parkinson’s Foundation and center of excellence network to perform research on this topic and to develop Aware in Care Hospitalization Kits.
The research clearly shows:
3/4 people with Parkinson’s do not receive medications on time when staying in the hospital!
When this occurs 2/3 will experience unnecessary complications!
With more frequent hospital visits and a high sensitivity to the timing and dosing of PD medications, people with Parkinson’s face great risks in the hospital.
You can be your own advocate by obtaining or downloading a Parkinson’s Foundation Aware in Care Kit which includes:
Medical Alert wallet card
1 Nurse Fact Sheet tear off pad
10 Sheets of the Medication Form
Hospital Action Plan
ID bracelet
Duopa Info Card
Deep Brain Stimulation Info Card
This amazing drawing is by our website artist Jonny Acheson
Who is Dr. Jay Banerjee?
Jay is a Consultant in Geriatric Emergency Medicine at the University Hospitals of Leicester; Honorary Professor in Emergency Care and Academic Champion in Clinical Leadership, University of Leicester; Visiting Professor in Safety Sciences at Loughborough University, UK. He has extensive experience of initiatives to improve care of frail older people at local, regional, national and international levels including a new international version of the UK “Silver Book”. Jay works as a Clinical Lead with NHS Elect on the Same Day Emergency Care, Acute Frailty and Specialised Frailty Networks. He has a Master’s in Education, a Diploma in Professional Coach-Mentoring and is currently working towards an LLM in Medical Jurisprudence to develop his practice on applying ethical and legal frameworks to improve care for incapacitated older people. Previously he has been an IHI Quality Improvement Fellow, led on developing NICE guidelines and been an Expert Advisor to the Centre for Clinical Guidelines. He presents and teaches widely and offers consultation services for service improvement via his company. He also co-developed and delivers a course on integrated approach to safety including Human Factors Ergonomics and Improvement Science. His work has influenced national policy in the UK’s NHS.
Visiting The Emergency Department With
Parkinson’s Disease:
Many people living with PD visit emergency departments with illnesses or injuries.
All EDs should ideally have access to Parkinson’s drugs that should be administered in a timely fashion.
What should you expect from your local Emergency Department?
The staff should inquire about your personal medication schedule and account for any missed or upcoming doses. They should try to contact your caregiver or family members if you are too unwell to volunteer the information yourself. You should inform them that you have Parkinson’s Disease upon arrival and that your medications need to be taken on time every time. Having a list of medications and of your providers (neurologist, primary care doctor) and the key contacts of your caregivers and loved ones is crucial.
What can you do when you are in the ED?
This was drawn by the website artist Jonny Acheson
Make sure you and the person you are with has a list of your medications and/or the actual medication bottles readily accessible for the ED staff to review. You or the person you are withmust insist on timely administration of your medications. Remember it is your body and you have the right to receive the right care. Timing is critical in Parkinson’s.
Should there be data sharing between your local
ED and your primary care provider?
Ideally the ED should have access to the medical records from your primary care provider which should again ideally have a list of your up to date medications and schedule of when to take these medications. Online medical record systems should ideally enable such sharing, and local and national laws are increasingly making it feasible across providers— so obtain this information if you don’t already have it. Unfortunately in some countries and regions this information is not available so it is not a bad idea to always have a brief summary of your medical conditions and medications you take available for the ED staff.
How should the ED attend to your physical needs?
All ED staff should ideally provide an environment that can duplicate diurnal lighting variations to make you feel comfortable. The trolleys/stretchers should be comfortable and there should also be chairs for you to sit on. There should be space to mobilize and space for your equipment if you use any (e.g. canes, wheelchairs and walkers). There should also be access to any assistive devices you may need. The ED should be able to offer you refreshments if needed and should provide access to appropriate accessible restroom facilities. We want to stress that these services may not be available in every ED.
How can you address these issues proactively?
If you live in the UK and haven’t already contacted your regional health provider’s patient liaison service and discussed provision of care for PWP in their local emergency department. Also, in the UK contact the national body dealing with emergency department accreditation, guidance, staffing and regulation to lobby them for proper provisions. Also, feel free to share this link with the services as it has much that can contribute to improving care for all vulnerable groups presenting to an Emergency Department in Britain.
Silver Book Resource Guide if you have to go to the Emergency Room
In the US and in other regions the link for the Parkinson’s Foundation Aware in Care Kit may be useful for emergency room visits.
To read more books and articles by Michael S. Okun MD check on Twitter @MichaelOkun and these websites with blogs and information on his books and http://parkinsonsecrets.com/ #Livingwith Parkinson’s #EndingPD #Parkinsonsecrets #LessonsFromTheBedside
He also serves as the Medical Advisor for the Parkinson’s Foundation.
To see more on Dr. Indu Subramanian she does live interviews of experts in Parkinson’s for the PMD Alliance.
The blog artist is Jonny Acheson.