About the project
A Paediatric Epilepsy Team in Luton are seeing huge benefits for themselves, their patients and their carers by using Patients Know Best (PKB).
The team work across both Luton Children and Adults Community Health Services (provided by Cambridgeshire Community Services NHS Trust) and Luton and Dunstable University Hospital (part of Bedfordshire Hospitals NHS Foundation Trust).
The team went live with PKB in 2021 to help improve the care a child and their carers receive from the service and to reduce the likelihood of being admitted to hospital with a seizure.
Our patients have lots of appointments, the parents are the ones to go to every single one of them, they are the ones that have to do all the chasing, they are the care coordinators for the children. What we don’t do is empower them to take on this role by providing them with all the information they need, and this is where Patients Know Best can help.
The award-winning team are already being recognised for their great work in 5 award categories, including runners up in one and Winners in the HSJ Award for Using Data to Connect Services Award :
A family's story
PKB tools and usage
MESSAGING
Enabling carers to get through to the team directly for advice and answers to non-urgent questions.
Family feedback: It is easier to contact the nurses without having to call and leave a message. So much quicker and more convenient.
Clinician feedback: It allows us to clinically prioritise the messages and respond to the most urgent ones first. It helps us to work out their plan for the day.
SHARED CARE PLANS
Providing the right information to be available at the right time.
Clinician feedback: For audit purposes it’s easier to be able to see what has been done in the community ie. care plans. Previously I wouldn’t know if care plans existed because they would be in a patient’s home on paper.
JOURNAL
Enabling carers to upload videos of seizures for clinicians to see.
Family feedback: So easy to document how many seizures my son has. Tiredness triggers my son’s seizures so it’s important to keep track.
Clinician feedback: The seizure diary is really helpful in clinic to be able to see at a glance how many seizures a child is having.
LIBRARY
Storing the relevant evidence-based resources, and other useful information such as factsheets and videos including Meet the Team.
Family feedback: Great to have access to all the right information at my fingertips.
Clinician: The library makes it much easier than sending leaflets etc. Also having videos available to new parents is great.
Partnership & Promotion
Future plans
Watch and wait team:
The project has recently gone live with another team using PKB called the watch and wait team. When a patient has their first seizure, they are added to this team and then have access to a basic library, can upload videos of their seizures and message the team. During this time, the patient is monitored and if it is found that the patient does have epilepsy they are discharged from this team and added to the main epilepsy team. If the patient doesn’t have epilepsy they are discharged from the watch and wait team.
New Care Plan:
Preparing a child for the move to adult services and taking more responsibility of their own health care can take time and patience. So they have created a new care plan to support patients through that transition from paediatric epilepsy services to adult epilepsy services. This will help in preparing the child and allow them to take more responsibility of their own health care. The care plan enables the teenager to work with the team to fill in any gaps in their knowledge and make sure they are ready for the move. The care plan is a ‘living’ document so can be updated at any time.
Integrations with Primary Care:
Part of the team’s plan is to engage with all GP practices in Luton. Currently they are in discussions with 2 Primary Care Networks (PCN's) as a starter. This is looking at using messaging in PKB between the hospital team and the GP pharmacists to make any medication changes or recommendations.
NHS England and NHS Improvement recently published a case study detailing the work of this project.
Read the full case study below.