Outcomes and Experience Research in Children’s Health, Illness and Disability (ORCHID), Great Ormond Street Hospital NHS Foundation Trust, London, UK

Background Children and young people (CYP) with an undiagnosed genetic condition and their families often feel isolated, live with uncertainty, struggle to access services, receive less (or less effective) treatment and see multiple specialists with too little coordination between them. A proportion will have a reduced or unknown life expectancy. Lack of designated support means parents often bear the responsibility of trying to coordinate their child’s care, acquiring relevant information about possible treatment options and acting as a liaison between the hospital and community. We were awarded funding to establish a new specialist post to support CYP with undiagnosed genetic conditions and their families.

Purpose A co-design project was conducted to shape, in consultation with key stakeholders, the job description and person specification for this new post. This forms part of a larger project which will pilot and evaluate the post over a two–year period.

Methods CYP and their siblings were asked to design the perfect ‘nurse’. Methods were tailored to their age, developmental, communicative and health needs and included designing superheroes, recording messages and a priority setting exercise. We also conducted face-to-face, telephone and focus group interviews with parents and a closed group online discussion forum was established to access a wider range of parental opinions. Hospital and helpline staff were interviewed.

Results Six CYP, 95 parents and 11 hospital and helpline staff took part. Participants engaged with the process. We identified what families, hospital and helpline staff wanted from the service, the outcomes that mattered most to them and how the post should be operationalized. Nine key themes from the data informed the job description and person specification and the role was appointed to.

Conclusions Parents valued the opportunity to share their experience, knowing they were helping to shape future service delivery. Staff reported that using co-design was key to understanding the challenges to implementing a new post and ensuring the post-holder knew what was expected of them. We believe that developing a job description in consultation with those for whom the post is intended will mean the post-holder is more likely to succeed in the role.