Aim NHS Kidney Care commissioned project to develop and implement a patient/family held care plan to be created by service users and multi-agency staff.

This project aimed to review existing documentation with staff and service users and co-design a care plan, to improve co-ordination of care across agencies and standardise access to education and information resources. Promotion of self-management and partnership working with parents, carers and young people was central to this.

Methods A Review, Agree, Implement and Demonstrate (RAID) model was used to develop and trial the care plans. Mixed methods were used to obtain qualitative data in the review and agree stages. Professionals and service users were invited to engage via questionnaires, interviews and co-creation events.

Results articipation data

Questionnaire results indicated that 58% of families are using some form of hand held record created for themselves.

A draught care plan was co-created by attendees at the focus group and interviewees. They then undertook a review and an amended care plan was collaboratively developed. The resulting care plan is transportable for use in a variety of settings. It is designed to encourage the patient and family to be active participants in care planning, and suitable for use from childhood through to young adulthood. The trial of the draught care plan is in progress with 20 patients and the multi-agency teams working with these children/young people. The utility and value of the care plan will be assessed after a minimum of 3 months use. A further review will be undertaken prior to full implementation

Conclusion This project has demonstrated the willingness of families and professionals from health, social and education services to participate in a co-creation project. This has allowed us to develop draught documentation designed to support the health, education and social development of children with complex renal disease.