Evelina London Complex Patients Project

Evelina London Complex Patients Project

Key contacts

Project Lead: Joy Gough

Evelina London Children’s Hospital

Email: joy.gough@nhs.net

Telephone number: 07837384113

Rest of project team: Sharon Roberts, Rohana Ramachandran, Lucy Pawlak, Elaine Doherty, Claire Wicks, Sarah Neilson, Rebecca Sheeley, Jenny Clarke, Hannah Gannon, Charlie Fowles, Tanya Mitra


  • Evelina London is caring for an increased number of ‘complex’ patients as treatments continue to improve and more children with serious and often chronic, conditions are surviving for longer.
  • This population of patients can be difficult to define and therefore obtain data for, which can hinder improvement work. 
  • These patients often have multiple co-morbidities and multiple teams involved in their care.
  • These patients also often have multiple A&E attendances, multiple admissions and are at risk for prolonged length of stay.
  • They are often also known to multiple community services.
  • Currently within our institution there is  no formal communication process between hospital and community teams and this could risk poor continuity of care and also wasted appointments in community. Much ad-hoc communication occurs but this is not standardised. 

SMART objectives

  • To establish a way to define and identify ‘complex patients’ and understand their patient journeys
  • To engage with patients and families to understand what is of value to them and identify areas for improvement within current pathways.
  • To model new pathways that allow more efficient and ‘joined up’ care for complex patients
  • To improve communication, in particular between hospital and community teams, to improve continuity of care, reduce wasted appointments and improve patient experience.

Progress made: What have you learned from doing this?

Working definition for our organisation : Established through literature review, staff survey and experimentation

At least one chronic or significant medical condition and 2 or more specialties or professionals involved in their care’

Using this we established a baseline list of 117 local patients admitted under general paediatrics alone in 1 year – decision to initially focus on this smaller population of patients with view to piloting interventions 

Interesting facts: Lots of really interesting data….

  • Only 7 out of these 117 Patients were LTV patients – ~ 6%
  • Average 3.5 Community Teams involved per patient. Up to 8 community teams involved with 1 patients
  • 7 patients had 5 or more admissions to hospital. Mean 2 admissions per year per patient.
  • Average stay in hospital each year per patient – 7 days
  • Average 11 hospital outpatient appointments per patient per year

Patient Engagement: 15 responses majority conversations by phone or face to face. Many moving stories emerged.

Common themes patient engagement – 

  • Communication
  • Information
  • Discharge process
  • Medications
  • Clarity of plan
  • Expectations
  • Timing

Pathway mapping: Mapping focused on admission and discharge pathways – highly complex as multiple professionals involved. Areas of waste and overlap identified.

Interventions: Work streams identified and interventions being planned….

  • The Complex Patients Pathway – Streamlining care, initially particularly focusing on identification, admission and discharge for these patients
  • Joining Up Care – We aim to improve communication and build relationships between hospital and community staff through joint learning events and information sharing
  • Patient and Parent Information – We aim to empower patients and their parents to confidently access the right care at the right time in the right place by improving information for parents and possibly developing a patient passport

What’s your take home message?

These patients deserve the best possible care. They often have hectic lives full of appointments and hospital admissions. They often have multiple health, social, emotional and developmental needs and multiple professionals involved in their care. Excellent communication and team working is therefore imperative along with good quality parent/patient information.