Creating an account

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If you have epilepsy and are 16-25 years old, you will need to create an account by using your NHS log in

If you are the parent or carer creating a My Epilepsy PKB account for someone with epilepsy under 16 years old, or someone between 16-25 years who is not digitally independent:  

  1. You will need to create a PKB account for yourself.  If you do not already have one, you will need to create one using your NHS log in 

  2. Once you have a PKB account for yourself, create a PKB account without using your NHS log in for your young person.

IMPORTANT: Your email address can only be used on one account. You will need to use a different email address to create and log into your child’s/your person’s account.  You could create a new email address for your child’s account; eg if your child is Sally Jones you could create a free email address for them eg: so that you don’t get your accounts confused.  

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How to be invited to be a carer on PKB

  • Once you have created your child’s account, you will need to invite yourself to be a carer on your child’s account.
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Use the Sharing section at the bottom of the welcome page to invite yourself into the account as a Friend/Family using Add Carer button

  1. Accept the invitation, click the link to accept the invitation. If you don’t have a PKB account already, you will be able to create an account.  When you accept the invitation you will have access to your child’s account on their behalf.
  2. Review share settings for Self Management Team team
    (Please note that Young Epilepsy’s Self Management team site is confidential and Young Epilepsy do not have access to your data even if you set access through this page).
  3. Click Save and Continue to Patients Know Best

Note: Although the screen may show that the Young Epilepsy Self Management Team can see any areas you checked, your record is confidential. The Young Epilepsy Self Management Team can see no data.


Tip: You may want to consider co-using your child’s account with your child if they have the capacity/maturity to use it. They will only be viewing information that the child, you or other carers have added. An unverified account is not connected to the NHS. If you are co-using your child’s account with your child, allow them to log in using the email address you have set up for them, then entries will easily be identifiable as to who made each entry, you, your child, one of your carers.


Remember: Anyone over 16 can create a PKB account for free, using their NHS Login, so you can invite members of your wider support group to have access to your/your child’s account. So Dad, Mum, Auntie Jane, and the school nurse could all be accessing the account to record information, log seizures, or to just make notes about your/your child’s epilepsy. 

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