PoTS Passport - Give your views! Survey

A small team within PoTS UK are working to create what we have named the ‘PoTS Passport’.

This will be a document that you can fill in and take with you to appointments as well as having embedded in your notes during a hospital stay or surgery. We hope this will ensure that the people in charge of your care are aware of what you need day to day.

This document will be able to be used even if the appointment or hospital stay isn’t PoTS related. We hope it will ensure you are receiving the correct treatment for whatever reason you are being seen without affecting your baseline symptoms.

We are aware that many healthcare professionals know very little about PoTS and similar conditions so hope that having a document with the important information will prevent patients from having to explain to each person treating you, making it an easier and less stressful experience.

As we are still early within the process, we are seeking your views to to get a better idea of what you want to see included. If you could spend a couple of minutes answering the following questions, we would really appreciate it!

1.Do you think this would be a beneficial tool during a surgery and/or hospital stay?(Required.)

Yes

No - please do say why in comments box below

Comments

2.Do you think this would be a beneficial tool during an outpatient appointment?(Required.)

Yes

No - please do say why in comments box below

Comments

3.Which of the following do you think would be important to include? Please tick all that apply.

What is PoTS

What to avoid with PoTS

What is helpful with PoTS

Name of PoTS specialist (if you have one)

Do I have a diagnosis? If so, when/where? (With space to fill in)

My main symptoms

My medication (with space to list including dose)

Moving around - Do I require mobility aids/Am I a fall risk? (With space to fill in)

Please do give any other suggestions you feel would be useful to include.

4.Would you prefer to have a passport specifically for PoTS or one that combines the overlapping chronic illnesses (e.g EDS, MCAS, ME/CFS, Long Covid…)(Required.)

PoTS only

One that covers overlapping illnesses.

Other (please specify)

5.This will be a printable document. Do you have the facilities to print this yourself?

Yes

Other (please specify)

6.Is there anything else you would like to tell us or suggest?

Thank you for taking the time to share your views.