PKB is providing Paediatric Epilepsy Teams with a platform to improve the care of their patients. They are seeing the benefits of managing their care and keeping in contact with each other between appointment times, reducing the need to call, Whatsapp, email. Parents and carers have the tools and guidance within PKB to manage the child's condition at home, confident that support is there when needed.

This page will show how different epilepsy teams use PKB to improve their service using PKB capabilities.

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Use cases / Case Studies

Sherwood Forst Hospital

At Sherwood Forest Hospitals NHS Foundation Trust, Dr Colin Dunkley, Consultant Paediatrician, and the epilepsy team have been using PKB for young people with epilepsy, when inviting carers to see their record so that everyone involved is fully informed and seeing the same up-to-date information.  ​​Older young people can have direct independent access alongside their parents as they transition to adult care.

The team is using 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. Customisable treatment care plan templates are available, along with a tailor-made library of resources to support the patient and carers.

Workflow

Outcomes

• Secure 2-way direct messaging with the epilepsy team retained within shared health record

• Secure video submission

• Repository for individualised patient information and care plans

• Service wide customised library of resources

• Seizure and symptom diaries

• Automated appointment diary with Attend Anywhere links

• Digital transition toward independence

Case Study

The Paediatric Epilepsy Team, which works 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), has been using PKB with their patients and families for a number of months.

The functionality they benefit from

• 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 – there are two plans they are finding really helpful which are:

  • 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.

• Videos – providing a secure way to send and store videos of a patient seizure and 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.

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

Key PKB features

Questionnaires 

Patients can initiate a questionnaire by clicking Start Questionnaire on their homepage or directly within the NHS App. Once completed, the questionnaire can be sent to a professional or team.

Teams using the questionnaire tool can ensure the outcome of clinical reviews is recorded and the patient has a copy. Teams can also identify patients suitable for virtual appointments or pre-operative assessment questionnaires.

PKB's advanced questionnaire functionality

The features include:

• Scoring and calculations

• Branching, allowing patients to complete the parts of the questionnaire that are relevant to them

• Coded fields questionnaires can be mapped to clinical codes

• Patients can save drafts

• Send questionnaires to patients who aren’t registered or already in your team

Questionnaire templates 

• Pre clinic questionnaires

Messaging 

• Patients have access to secure messaging (saving time on the phone).

• Messaging across multi-care providers, including the parents/carers in the conversations

• Share videos securely, parents/carers add doctors and nurses

• Team can handover messages and bring different people into the message thread

• The Admin team can triage messages. Either resolving or passing onto another speciality team

• Team-based messaging allows teams to automatically receive secure messages and questionnaires as a group rather than as individuals

Library 

• Relevant leaflets in the library, (No more paper)

• Meet the team videos / including admin staff - patients know the whole team

• Videos by the team instructing parents/carers/patients about different aspects of epilepsy

• National and local information and guidance

• Hospital and trust information

• Disease-specific information

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Care plans 

PKB have a care plan toolkit with examples of care plan templates used by teams. There is a process for teams to amend care plans or create new ones here. A selection of peri-operative care plans is below.

• Seizure Diary:

  • A place to track and record symptoms/triggers and seizures to share with the team

  • A place to share the different types of seizures the child has in non-medical terminology

  • A place for clinicians to document their diagnoses of specific seizures

• Medical History:

  • Detailed medical history with common questions parents/carers and patients are asked to repeat frequently

  • Capturing information once from parents/carers, patients, and clinicians

• All about me:

  • Complex needs assessment

  • Ability to print out when going into hospital so the parents/carer don’t have to repeat

• Contact:

  • Allows parents/carers and clinicians to record all contact details of the services the patient may have involved in their care

• Emergency plan:

  • A place to share the current emergency care plan with parents/carers/patients and clinicians

  • A resource to parents on how to administer emergency medications

• Epilepsy welcome care plan: sharing key information about the team and what to track

Journal 

• Details of specific seizures, including the time preceding a seizure. The nurses have commented that this detailed information wasn’t shared prior to PKB.

• Upload seizure videos

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Symptoms & Measurements 

• Tracking seizure triggers and types/frequency of seizures

• Allows clinicians and parents/carers to see trends or patterns

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Data 

• Sharing blood results

• Appointments and appointment letters

• Clinical and discharge letters

Comms 

• The team has a monthly newsletter that they started writing about PKB very early in the project.

• The team discusses PKB with the parents/carers and patients at every opportunity, including prompting and reminding to enter info into PKB

• Fortnightly parent/carer meetings with the team to discuss all things epilepsy, including PKB and how its usage has improved outcomes

• Planning on doing face-to-face meetings with parents for comms and training

Further information

• Epilepsy care plan template examples: three examples of care plans used by epilepsy pediatric teams

• Paediatric Epilepsy teams using PKB: the benefits and features they use

• Luton: Supporting children with Epilepsy: features they are utilising and the benefits and outcomes

• Paediatric access: workflows for children 16 and under having access to their PKB record

• Adding a parent or guardian: workflow for adding a p