We exist to improve the lives
of everyone affected by epilepsy

 

What do you think about sharing access to your medical records with people involved in your epilepsy care?

Background

  • Ambulances are sometimes called for people with epilepsy who have had a seizure. They may take the person to hospital Accident and Emergency (A&E) departments.
  • Ambulance and A&E staff do not usually have access to a person’s medical record. This can mean they often do not know a lot about the person they are caring for.
  • Ambulance and A&E staff have said that what would help them offer better care to people with epilepsy is if they could see important information about the person with epilepsy.
  • The sort of things they would want to know are:
    • What do the person’s usual seizures look like and how long do they last?
    • What treatment is the person receiving for their epilepsy?
    • Does the person have any emergency ‘rescue’ medication?
    • Would the patient prefer to go to a designated ‘safe place’ to recover?
    • Do they have any allergies?
    • What are the contact details of the person they would like called when a seizure happens?
  • To try to make things better, at Liverpool University we are thinking about creating a special medical record for each person with epilepsy. It would be based on information held by those involved in the person’s epilepsy care, such as their neurologist, epilepsy nurse and GP. 
  • We would like the person with epilepsy to be engaged with the record. They would be able to see the record and keep the information up-to-date. This would include things like their seizure record, emergency contact details, details of their preferred safe place.
  • Ambulance and A&E staff would then get to see this medical record of the person with epilepsy if they ever care for them.  
  • This medical record would be stored on a secure NHS computer system and only be seen when needed.

What is this survey about?

  • Before going any further with our idea, we would like to hear what people with epilepsy think about our plans.
  • If you have been diagnosed with epilepsy, we would like you to answer the questions on our survey, by clicking on the link below.
  • The answers you give are just for research, they will not impact on your care and we will not ask for you name. There are no right or wrong answers.
  • This survey will usually take around 15 minutes to complete.

Take the survey

Event Date: 
Tuesday 12 May 2015 (All day)

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