Frequently Asked Questions

You can add an icon on the main menu of your mobile phone to create a shortcut to your My Epilepsy account by following the instructions below: 

Add ‘My Epilepsy’ to your Home Screen on your iPhone or iPad: 

1. Go to the PKB Login page on your phone’s web browser (e.g. Chrome, Safari or Edge) 

2. Tap the Share icon (the square with an arrow pointing out of it) at the bottom of the screen 

3. Scroll down to the list of actions and tap ‘Add to Home Screen’ 
   (If you don't see the action, scroll to the bottom and tap Edit Actions, then tap Add next to the 'Add to Home Screen' action) 

Got an Android? Follow these instructions: 

1. Go to the PKB Login page on your phone’s web browser (e.g. Chrome, Safari or Edge) 

2. Tap the menu icon (3 dots in upper right-hand corner or at the bottom) and tap 'Add to home screen' or 'Add to phone' 

3. Choose a name for the website shortcut 

Add My Epilepsy to your bookmarks/ favourites bar on a PC  

There is no way of logging seizures on your My Epilepsy homepage, as PKB is a full health record, which enables you to input all kinds of data, not limited to epilepsy. 

There is, however, a way of establishing up to four main seizure types in your/ your child’s self-management plan, so that seizures can be easily and rapidly recorded in the measurements section, which has a shortcut in the welcome message on your homepage. 
 
Find out more on how to do this here.
 
We have integrated the journal feature, to give you the option to make additional notes and expand on the details of seizures experienced, as well as potential triggers, if it feels necessary. This has been adapted as a separate feature, so that you can utilise it at a time that us most convenient for you.  

You can log your seizures directly through the shortcuts on your welcome message and you can log your most common symptoms daily on the homepage 

It is important that you use your own PKB account to access the records of the people you are caring for, to ensure the data inputted is kept separate from your own. You may be assigned as a carer for multiple other users, it is vital that these are listed separately on your personal account for easy access. 

You can upload various files to your PKB account, including PDFs, Microsoft Word documents (converted to PDFs), and images (jpeg, jpg, png, gif). 

You can also upload videos of seizures and audio recordings of key conversations or meetings, as well as reminder notes to yourself, dependent on size limits.  

More information can be found here: https://manual.patientsknowbest.com/patient/attachments 

The measurements feature in your PKB account is not only useful for logging seizures and general health information in vitals, but for recording your exercise diet and sleep, so that it is all in one place. 
 
For those following a keto diet, you can monitor grams of fats, protein and carbohydrates etc. Use “add measurements” to record your diet and it will appear on the diet tab 

Watch this short video to learn the most efficient way to use this feature.

Ask your professional team (e.g. clinicians, school nurses, social workers etc) if they would like you to share your/your child’s account with them by using ‘add professional’ through the sharing feature, which can be found in the main features menu or the shortcuts on your homepage.  

Watch this short video on the easiest way to do this. 
 
Once access has been granted, you will be able to communicate with the assigned healthcare professionals via the ‘events and messages’ feature, which also keeps a log of all communications,  

If your hospital is using PKB they may be able to add your account to their clinical team and monitor your data directly, as well as appointment letters, clinical events, referrals and discharge summaries etc. 

One of the fastest ways you can do this is via the ‘Send message’ button to the right of the welcome message on your homepage. You can select the recipient from the dropdown menu, add a subject, and then use the textbox to write your message.  

You can also add files, including photos and videos, and choose a privacy setting to choose who has access. 

If you scroll down to the main features menu on the homepage and enter ‘Events & Messages’, you will be directed to a record of all communications that have taken place between you and your teams. This record is not limited to messages; you will also find letters, online consultations and details of visits. 

As per the homepage, there is a ‘send message’ button in the top right hand corner, which will take you to the same page. 

You can also use the ‘Discuss Selection’ option on various pages about a particular data entry.  Check the box for a particular data entry e.g. Gluten Free and click ‘Discuss selection’, this will open a message you can send to anyone connected to your account, and complete as a message above. 

If you are actively logged on your account, you will remain logged in. As this is your personal health record that contains sensitive data, PKB have installed security measures to log you out of your account when it’s not being used.  

You can create a PDF of any page in your record by using the browser function on your laptop to “print/print to PDF”. Go to any areas of your account that you would like to save the data on eg Journal, and then on your browser bar go to Print, then select Print to PDF, and click Print, you can then save your PDF to your device and email it.

Lots of devices can be linked to your My Epilepsy account, including sleep trackers, Apple health and fitness trackers, such as FitBits etc. which will be fed through the measurements section. Young Epilepsy aims to broaden this to get your epilepsy apps and wearables onto PKB in the future.  
 
A full list of devices you are able to link to your account and instructions on how to do so can be found here:  PKB Manual - Devices (patientsknowbest.com)

Go to the Library section of My Epilepsy, either via the short cut on the home page welcome message, or scrolling down to click on the Treatments section, then click Library. 

Remember this is your one stop place for Epilepsy, so you can add other links to useful information that you find using the "Add link" button in the Share health links section at the top of the Library, and then add your own description and URL address that you can copy straight from a web page.  You can also decide who see's this link by choosing privacy settings.  Don't forget to "Save".