1. Parent Engagement Jane Abbott Head of Programmes

2. What do we mean & why is it important? Many different aspects of engagement with parents: –encourage their involvement as carers (to be partners in care) –ensure they have the information and support they need to make sense of and cope with the situation –seek their support (eg with research) –ensure that service understands their needs and can respond to them

3. Why is it important? Increasing emphasis on PPI Parents as proxy patients Growing evidence to support FCC Many research studies can’t take place without parent support

4. Toolkit for High Quality Neonatal Services –Principle 3 audit indicators include “parent feedback” and “independent national parent surveys” NICE Quality Standards –QS 5 includes reference to evidence of regular surveys on parent experience, and states that “parents’ experience is monitored through satisfaction surveys and the evidence used to inform learning and change for improvement.” Other drivers

5. Bliss Baby Charter Standards Principle 4 ‘Units encourage parents to be involved in plans and processes for continuous service improvement, and outcomes of care are benchmarked against local and national standards’ Specifically, “feedback from parents is regularly sought, collated and fed into decision-making processes”.

6. User involvement in networks Bliss working with most networks to recruit and train parents to act as ‘user reps’ Some egs of good practice where there is a high level of parent engagement, leading to improvements in service delivery

7. Parent satisfaction surveys some networks have done/are doing surveys time consuming to collect, collate & analyse can’t currently be used to benchmark nationally

8. Bliss/Picker Parent Survey 75% of networks participating Not national coverage but will enable units to compare their performance with units of similar type and size across England Not cheap (but then nothing is)

9. What else could be done? parent-completed screen at discharge –linked to baby’s record on Badger.net Advantages: - easily collected / standard questions Possible disadvantages: - ‘too immediate’ a response

10. Thank you Jane Abbott Head of Programmes janea@bliss.org.uk 020 7378 1122