University Hospitals of Morecambe Bay NHS Foundation Trust

Project aim: To improve the quality of communication for 10% of CYP with complex epilepsy amongst healthcare professionals(stakeholders) from poor (missing and fragmented) to good (comprehensive and up-to-date) to improve the patient outcomes for epilepsy management and emergency care by March 2022.

EQIP team

Project aim

To improve the quality of communication for 10% of CYP with complex epilepsy amongst healthcare professionals(stakeholders) from poor (missing and fragmented) to good (comprehensive and up-to-date) to improve the patient outcomes for epilepsy management and emergency care by March 2022.

Background

Many of the Morecambe Bay Investigation recommendations by Bill Kirkup focused on the importance of integrated patient care and safety, improved team working, and better communication between professional disciplines. We have for many years undertaken the Epilepsy 12 audits and recognise the need to improve our epilepsy services; the rurality of our Trust is quite challenging and delivering services across a wide patch need a coherent team working across boundaries to improve our children and young people with epilepsy and their families and cares experiences.

  • Children and Young People’s (CYP) epilepsy service runs across a wide patch and multiple providers
  • Communication about the condition was out-of-date, fragmented and unavailable to some professionals, with implications for the quality of care families/children and young people receive

Feedback from families, colleagues and different providers identified:

  • Lack of consistency in access information about individual patients and their care plan/emergency care plan
  • Safety concerns in the use of rescue medication, seizure types, medicine reconciliation and treatment
  • Patient experience issues as a result of informational continuity to be shared with healthcare and educational setting

As a team we are passionate and keen to make this project a success hopefully will be a beacon of patient focused service in paediatric epilepsy.

Tests, changes and what was learned in the process

September/October 2021

To establish a unified standardised communication platform between professionals, service users, emergency services and education.
This will be in the form of an Epilepsy passport/portfolio located on the EPR system, which is multisite, accessible for all professionals involved in the care of the child/family. This has two main functions 1-to improve patient contactability,  to aid clear and accurate communication between
professionals.

  • We will contact the RCPCH epilepsy passport team to get an update on the actions from the 2018 evaluation report.
  • We aim to target our children with complex epilepsy and comorbidities (around 50% of all epilepsy patients) then roll it out to
    the rest of our epilepsy cohort.
  • By contacting health care professionals and seeing patients.
  • Contact IT services to help finalise digital format and create and locate the “passport” in a specific area (epilepsy tab)
    on our EPR system so it will be available to everyone dealing with these children.

November/December 2021

  • By contacting health care professionals and seeing patients.
  • An editable draft of the passport is now available on our system. We will use feedback collected from patients and professionals to improve this draft.

Patient and parent engagement

September/October 2021

  • Consult with engaged parents and young people about how this project will impact their condition/ life and our care.

November/December 2021

  • We have spoken to 4 families of children with complex epilepsy.
  • We have contacted Trust nurses who lead a youth Forum to see if we can get feedback from any teenagers with epilepsy.
  • Consult with engaged parents and young people about how this project will impact their condition/ life and our care.
  • Patient/ family feedback has shown that the areas important to them is Medication, types of seizures (how to recognise and triggers) adjustments needed in hospital (inpatient and outpatient)

Challenges

September/October 2021

Draft forms (variation of the RCPCH form) of passports will be shown to professionals and sent to young people and their parents/carers. We will then collect feedback.

November/December 2021

  • Multisite service covering a large area. Working across boundaries and teams( acute/communities/education,
  • Document/ passport will need to go through the Trust procedural documents team for approval,
  • We need to ensure the document is editable so it can be edited regularly (IT support),
  • Liaising with patients/Families has been hard due to most clinic appointments still not being face to face,
  • The youth forum has not been able to meet as regularly, and feedback has shown that these teenagers are happier to discuss there care in a group of peers or face to face.

March 2022

  • Time to dedicate,
  • Small but passionate team,
  • Lack of dedicated PESN,
  • Winter & COVID pressures affecting priorities,
  • COVID minimising face-to-face contact,
  • Service across multiple sites and wide geographical area,
  • Timeframe for full testing and measurement of success.

Successes

  • We have achieved a lot in a short space of time,
  • Enthusiastic team supported by the EQIP team,
  • Good patient family input that helped to identify our drivers for improvement,
  • Great partnership working and amazing IT team /EPR system support,
  • Encouragement and support from families and colleagues,
  • Resulted in the development of the Epilepsy passport within our EPR.

Results

September/October 2021

  • Some clinicians have previously used passports and had issues regularly updating them.
  • Multisite service covering a large area. Working across boundaries and teams (acute/communities/education.
  • Document/ passport will need to go through the Trust procedural documents team for approval.
  • We need to ensure the document is editable so it can be edited regularly (IT support).

November/December 2021

  • Draft forms (variation of the RCPCH form) of passports will be shown to professionals and sent to young people and their parents/carers. We will then collect feedback,
  • We have collected some feedback from 4 families of patients with complex epilepsy. We have had to do this via clinic or email due to  restrictions,
  • IT have put a draft editable passport on our IT system,
  • We have emailed Professionals to let them know where to find this and have asked for feedback.

Next steps

September/October 2021

  • We will meet to discuss passport contents and features and produce a draft.

November/December 2021

  • We will meet to discuss feedback from patients and professionals and look at Changing passport to make it more user friendly.

March 2022

  • Continue to lobby to appoint PESN to further development of the Epilepsy QI project,
  • Passport to be reviewed and approved by governance structures so that it is embedded into practice,
  • Share achievements with RCPCH epilepsy passport team for further development,
  • Present our work regionally and nationally through RCPCH EQIP conference,
  • Continue to refine the electronic passport as part of the patient EPR with future view of developing secure portal which will enable the passport to be editable by professionals, young people and families. This makes the passport accessible, up to date and accurate with a singular copy available at all time.

Team presentation

 


Would you like to know more about these projects? If you would like to contact any of these teams about their QI work then please get in touch with the EQIP faculty at eqip@rcpch.ac.uk

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