The Chameleon Project was a 12 month initiative to improve children’s end of life care in the northern region of the East Midlands. The project aimed to identify those children who might die within 12 months and support personalised care planning, symptom management plans and improve care in terms of options, support and choice of place of end of life care. Below, Dr Toni Wolff gives an overview of the project.
As there was no specialist paediatric palliative care team in the region, we made a successful bid to NHS England’s Marginal Rate Emergency Threshold (MRET) and Readmission Fund for the Chameleon Project  in 2018.
The project was funded for 12 months to audit and improve children’s end of life care across the region. The team consisted of a lead consultant disability paediatrician with expertise in palliative care (10 hours per week), plus a specialist children’s palliative care nurse (3 days per week) and a network administrator / data clerk (2 days per week), plus paediatricians with expertise in palliative care in the paediatric intensive care unit, oncology unit, neonatal intensive care unit and in each of the district general hospitals in East Midlands – North (total of 18 hours per week).
The team developed tools to aid identification of children with end of life care needs and personalised care planning. These were embedded by weekly attendances by the team at ward rounds and board rounds in the region’s hospitals. Lectures and case based teaching sessions, clinical advice and support for end of life care were provided to clinical teams.
Children with life limiting conditions who died an expected death in the 12 months of the project were identified from the child death review databases. Numbers of specialist hospital admissions, bed days, and costs were identified. The quality of care was evaluated from documentation of care plans and post bereavement family feedback questionnaires.
29 children died an expected death during the 12 months of the project and the same number died during the previous 12 months. Compared to the year before the project started, the median number of non-elective admissions reduced from 2 per child to 1; the number of non-elective admissions in the last 12 months of life reduced from 78 to 56 (28% reduction); and the specialist ward bed days were reduced from 504 to 251 (50% reduction).
For the children who were admitted to PICU in the last 12 months of life the total PICU bed days for the group was reduced from 342 to 184 (46% reduction), the median length of stay was reduced from 21 days to 11 days and the maximum length of stay was reduced from 141 days to 38 days.
The percentage of Nottinghamshire children who died an expected death who had documented anticipatory care plans rose from 50% to 70% and the percentage who had specialist paediatric palliative care support rose from 61% to 100%. However the availability of 24/7 community nursing support when place of care was home fell from 100% to 50% and only 65% of children in the last year of life had specialist emotional support for themselves and their family and only 59% had a clearly identified keyworker to coordinate their care.
The costs of NUH specialist and critical care bed utilisation for 29 children in the last 12 months of life was reduced from £1,104,774 in the year before the project to £636,353 in the project year which is a cost reduction of £468,421, and an average saving of £16,152 per child.
The data collected during the project suggests that a network of clinicians with expertise in paediatric palliative care working together across a region can improve anticipatory care planning and reduce admissions and bed days for children in their last year of life with reduced specialist bed utilisation costs for this client group.
Dr Toni Wolff is Consultant Paediatrician Neurodisability at Nottingham University Hospitals NHS Trust.