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Around 50 million people worldwide have epilepsy, making it one of the most common neurological diseases globally.

Epilepsy affects the brain and nervous system. Seizures always start in the brain and are caused by many different underlying causes, including a person's genetics, a structural change in the brain or from other underlying conditions.

There are over 40 different types of seizure, and not all of them are physical which is why epilepsy can also be an invisible condition.

For World Epilepsy Day 2024 we wanted to catch up with our Paediatric Epilepsy Teams who are using PKB to support their patients and their carers.   In what can be a very traumatic and complex condition, we’re seeing how PKB can help them feel supported, manage their care better and stay in touch easier.  

The areas of the PKB platform they are finding most useful are:

Messaging
Care Plans
Videos
Libraries

Journals

Carers of children with Epilepsy particularly find the personal health record useful for keeping all the information secure in one location and being able to communicate to healthcare teams in one place.  They say it is comforting to know they feel supported by the whole care team at all times in sometimes very difficult and frightening situations.  

This short video tells the story of one parent and his son’s experience of using PKB and how it has improved life for them dealing day to day with a long term complex condition.

“PKB allows us to prioritise effectively and gives parents and carers peace of mind. Parents/carers are able to show their child's records to clinicians such as paramedics in emergency situations (emergency care plan) rather than having to carry documentation with them.” 
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The Paediatric Epilepsy Team, who work across both Luton Children and Adults Community Health Services (provided by Cambridgeshire Community Services NHS Trust), Bedford Hospital and Luton and Dunstable University Hospital (both part of Bedfordshire Hospitals NHS Foundation Trust), have been using PKB with their patients and families for over two years.
“Using PKB allows us a much more timely process of getting crucial information to our parents and carers about medication changes and revisions to emergency care plans via attachments. This is improving patient safety and the service we can provide. For our clinicians, having a single point of access from our clinical system (SystmOne) to PKB is quick and has allowed more efficient use of nurse time through the messaging functionality which is fast, efficient and secure.”
Children’s Epilepsy Specialist Nurse, Cambridgeshire Community Services NHS Trust.
The PKB functionality they find most useful is : 
Messaging – helping to communicate with carers and patients to provide a two-way conversation and allow carers and patients the ability to message in with any concerns or questions.
Care plans – 
Seizure Diary Care Plan - specifically for carers and patients to be able to describe their seizure activity.
All About Me Care Plan -  this is used for carers and patients to document all the information they are regularly asked about on admission to hospital removing  the need to answer the same questions repeatedly.
Chit Chat Care Plan - a plan to support paediatric patients to prepare for their transition to adult services
Videos – providing a secure way to send and store videos of a patient seizure.  Clinicians are able to easily access it when they need to.
Library – providing an extensive library of information for patients and carers, ensuring the most relevant information is available and is all in one place.
Attaching documents - sharing information around changes in prescriptions and expediting referrals requiring signature of parents.
“This is improving patient safety and the service we can provide.”
Children’s Epilepsy Specialist Nurse, Cambridgeshire Community Services NHS Trust.

NHS England and NHS Improvement recently published a case study detailing the work of this project.

Read the full case study here.

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Click here to read a news article from Bedfordshire, Luton and Milton Keynes CCG about the use of PKB to improve the care of children and young people living with Epilepsy.
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Over the past two years, Dr Colin Dunkley (Consultant Paediatrician) and the Epilepsy team at Sherwood Forest Hospitals NHS Foundation Trust, have seen, via their national audit data, that their care planning completeness has significantly improved. 
This is achieved via an assembly of information that mainly resides in the PKB Library section. Currently the team is working to embed ‘About Me’ functions aiming to strengthen families' abilities to construct and securely share key information important to them.
The team continues to use PKB to provide a quick mechanism for carers and/or patients to message the Epilepsy team (pre and post diagnosis) with the potential to securely send in patient seizure videos for review. 
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“It’s vital that children and their families with epilepsy feel connected to their health teams…’contactability’ and gathering ongoing information are key.”
Dr Colin Dunkley, Consultant Paediatrician, Sherwood Forest Hospitals NHS Foundation Trust
The benefits the team hope to get from using PKB:
Reducing the dissemination of information via paper to reduce their printing costs.  Now they provide the majority of information in the team library on PKB ensuring it’s available when they need it and is always up to date.
Increasing the use of the secure messaging functionality in PKB. Giving the patients and carers functionality to message their whole team directly to ask any questions, send videos or answer queries.
Introducing various care plans directly to the patients and carers including a seizure diary so they can easily record seizures when they happen and are able to monitor them better.
Sending outpatient and appointment letters automatically via PKB again reducing the cost of printing and postage. 
“I can’t stress how important it is that families and young people are able to contact their epilepsy team between appointments. It improves health outcomes, health literacy, education and social inclusion for the children and young people. Contactability is essential to achieve service user satisfaction.”
Kirsten Johnson, Epilepsy Nurse Specialist, Sherwood Forest Hospitals NHS Foundation Trust
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Young Epilepsy has been piloting "My Epilepsy," their innovative self-management tool for epilepsy, on PKB. This platform offers free access for young individuals and their families to securely record, manage, and share their health information in a centralised location.

The sad reality is that currently many young people with the condition have to manually record data about their seizures on paper or on local digital files which are patchy, unsecure and inaccurate. Parents attempt to keep records of their child and struggle to reconcile with separate notes written by the school, visiting nurses and GP practices. This means that the inaccuracy of data makes it harder for clinicians to recommend timely medication and treatment interventions.

Mark Devlin, Chief Executive, Young Epilepsy

My Epilepsy, in collaboration with clinical teams at Sherwood Forest and Bedfordshire, Luton and Milton Keynes, offers a comprehensive platform for epilepsy self management. With seizure diaries, symptom tracking, personalised care plans, and a Young Epilepsy information library, users gain insights and share information with ease. Using My Epilepsy on PKB, all health conditions can be tracked conveniently in one place, empowering users to take control of their health journey wherever they are.

Here’s what users piloting My Epilepsy find helpful:

It makes living with epilepsy much more easy to manage having all information in one place. Young Person
Confidence in my seizure management, being able to take control and be responsible with the option of sharing to family. Appointment and symptom tracker so I don’t freeze when they ask me because I easily track it.  Young Person
I find keeping a record of my son’s symptoms and health issues, how they affect his schooling, his friendships, how his medication affects him, if/when he has a seizure how it presents and I can log it, and so on.  Parent
Purple Day is on 26 March. It’s a day for increasing awareness of epilepsy worldwide. But it's not just a day; it's a movement, and Young Epilepsy wants to show children and young people with epilepsy that we’re on their team. To find out how, Click here.

We look forward to continuing our work with the teams to improve the lives of people living with epilepsy.