PoTS Passport: PoTS Passport
At PoTS UK, we recognise that many people living with PoTS experience challenges within healthcare settings because of limited awareness or understanding of the condition and how it affects daily life.
This can lead to:
- symptoms being misunderstood
- needs being overlooked
- care plans that don’t fully take PoTS into account
We also recognise that the need to repeatedly explain the condition and care requirements can be physically and mentally draining.
Based on this, we are piloting a new PoTS Passport.
The PoTS Passport aims to ensure patients with PoTS receive safe, informed, and appropriate care in medical settings by clearly communicating their baseline symptoms, physiological needs, and condition-specific adaptations required alongside treatment for other health issues.
The PoTS Passport is not a diagnostic tool. Instead, it is a practical support document that can be used during outpatient appointments, hospital admissions, surgical procedures, dental treatment, and many other healthcare interactions.
We are piloting this idea and plan to adapt and amend the Passport based on your feedback to ensure it is as helpful as possible.
If you have any feedback on the PoTS Passport that you wish to share with PoTS UK, please complete our survey. It may be that you feel something is missing that we should include or you may be a healthcare professional wanting to share your views. We want to hear from you!
Frequently Asked Questions (FAQ’s):
Who can use the Passport?
Anyone with a diagnosis of PoTS or those that feel they may have it but are yet to receive a formal diagnosis.
My PoTS is well managed; can I still use the passport?
It is completely your choice if you would like to use the PoTS Passport. It is not a requirement to use it, but you or your healthcare professionals may find it helpful.
Where can I use it?
We hope this passport will be useful in many situations but would encourage you to take it with you to:
- Hospital stays (For PoTS or other)
- Outpatient appointments (For PoTS or other)
- GP appointments (if there’s time!)
- Dentist appointments (adaptions may be required with anaesthetic etc.)
- A&E (Depending on time and emergency status)
- Maternity appointments/stays
- Schools
- Workplaces
How can I use the passport?
All hospital and medical settings work differently, and PoTS UK cannot specify how healthcare professionals will use this document. It may be that it is added in to your medical notes, kept at the end of your hospital bed or may be that you keep it with you to be shown as needed.
How can I get a copy?
We strongly encourage people to print these at home if possible.
Download the PoTS Passport here
We do have them available to purchase from our shop but due to printing and postage costs and staff time, they are priced at £2.50 + postage, which we appreciate is expensive. Please do print at home or local print/stationary shops or library (costs are typically less than £1).
My doctor is refusing to read the Passport, what can I do?
The passport is a helpful tool to assist with patient care; however, healthcare professionals are not required to read or follow the guidance provided.
What if I suffer from more than one chronic illness?
We are currently only piloting the passport for PoTS but you are welcome to list any overlapping illnesses in the additional information section so your healthcare team is aware of what they are and how they may overlap.
What can I include in the additional information section?
- Anything else you want your healthcare team to know about your condition.
- Overlapping illnesses.
- Baseline observations (HR, BP etc).
- Any known triggers.
- Medications.
Do I have to live in the UK to use the passport?
No, anyone is welcome to use it.
My condition has now changed. How can I update my passport?
We would suggest printing and completing a new copy and requesting that it is updated should it be stored by any of your healthcare providers.
My doctors already know all of this…
PoTS awareness and understanding is vastly different across the UK, and rest of the world. This passport is available for use if you think it will be of benefit to you/your healthcare professionals.
I want to add things that aren’t already on the Passport…
If there is anything else you would like your healthcare team to know about your care, feel free to add it into the additional information section.
This document is meant to be tailored to your care specifically. We would advise you to keep things brief as there will be a greater chance of it being read.
Is there a digital version available?
Currently not but feel free to leave any feedback via this survey to let us know how we can improve.
What do you mean by pilot?
We fully expect to make changes to this document based on your feedback. It is a work in progress and as a community, we hope we can find something that patients and healthcare professionals can find equally helpful.
Thank you
Thank you to everyone who completed our survey requesting feedback that helped us develop this PoTS Passport. We had almost 800 responses with 100% stating they felt a passport of this nature would be beneficial. Thank you also to our medical advisors for their guidance and input. Here are some of the things you told us
