Firstly, thank you to all the parents and clinicians who helped us during Phase 2 to co-design the new interventions to improve communication of positive NBS results.
There were 4 co-design working groups who, together with help from relevant clinical teams, have produced the following interventions:
- Suggested changes to the newborn bloodspot screening card
- National laboratory pro formas (based on those developed and used by the Sheffield Newborn Blood Screening Laboratory) for each of the conditions 9 conditions (CF, CHT, ENBS, MCADD, PKU, SCD) currently included in the Newborn Bloodspot Screening Programme
- Communication checklists for the 9 conditions (CF, CHT, GA1, HCU,IVA, MCADD, MSUD, PKU, SCD) currently included in the Newborn Bloodspot Screening Programme
- Information provision for families who have received a positive (abnormal) newborn bloodspot screening result
We would especially like to thank;
- the parents who gave up their time to help us with the co-designed interventions
- the Department of Clinical Chemistry and Newborn Screening, Sheffield Children’s NHS Foundation Trust for allowing us to use their template which has formed the basis of the lab pro formas.
- the CF teams at Sheffield Children’s Hospital and King’s College Hospital for sharing their templates and the suggested content offered by the Lead IMD & Newborn Screening Nurse at Birmingham Children’s Hospital which has collectively formed the basis of the communication checklists
- Gemma Hack and Tanya Gill, Paediatric Metabolic Clinical Nurse Specialists at St Thomas Hospital for their suggested template which has formed the basis of the information provision intervention