Phase 3 Training Resources

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:

  1. Suggested changes to the newborn bloodspot screening card
  2. 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
  3. Communication checklists for the 9 conditions (CF, CHT, GA1, HCU,IVA, MCADD, MSUD, PKU, SCD)  currently included in the Newborn Bloodspot Screening Programme
  4. 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