Background Prior to the Merseyside End of Life (EOLC) pilot, palliative and end-of-life care for children and young people (CYP) across NHS Merseyside has been provided by the specialist palliative care team for advice and home assessments visits on a 24/7 basis and supported on an ad hoc basis by local Children’s Community Nursing (CCN) teams and/or adult district nurses.

None of the existing CCN services across this footprint (6 Clinical Commissioning Groups – CCGs) were commissioned to provide the ‘step up’ support for EOLC at home, including the availably of 24/7 CCN support, which potentially limited realistic choice in place for EOLC for children and their families.

Unlike adult EOLC one of the major challenges of providing care for children is that diagnosing dying is difficult as children often have peaks and troughs in their condition and therefore, sustainable services that are responsive to provide a step up, step down approach are essential.

The North Mersey Paediatric QIPP programme identified specific gaps in service provision for EOL care and also reflected on the small numbers of children’s deaths for each CCG. They noted that there were significant challenges for existing CCNT to maintain skills and expertise in this specialist field and a potential solution was a collaborative partnership approach with Claire House (CH).

The proposed pilot was for a Hospice to Home Team who are skilled and experienced practitioners to provide a 24-hour rapid response service for EOLC across the Mersey footprint, working in partnership with existing CCN and SPC Teams.

The aim was to facilitate this for between 15 and 23 children, enabling them to have an equitable, responsive and realistic choice for EOLC at home. This development supported the increase in home based EOLC to meet the best in England.

In order to make a success of the pilot collaborative working was key. An operational stakeholder group was formed which had representation from hospice, SPCT and CCNT. Shared referral pathways, key communication messages, procedures and policies were jointly formulated and endorsed. This group met fortnightly initially whilst essential operational documents and governance issues were discussed then as the pilot became open to referrals this became monthly. Case discussion and reflection was paramount for group learning and for continuous service improvements.

A steering group provided a mechanism for feedback on the pilot’s progress and monitored governance, risk and acted as a critical friend. The steering group ensured that preparations were in place to present to commissioners at an appropriate time so they could consider future commissioning.

The service has now been commissioned by the six Merseyside CCGs as a model of service delivery.