Presentation by Karen Mainwaring, Senior Lead Nurse, North West Neonatal Operational Delivery Network and Rachel Corry, Greater Manchester Parent Advisory Group at Maternity and Neonatal Learning System: patient and public involvement in improving maternity services event on Wednesday 5 June at Haydock Park Racecourse.

1. Maternity and Neonatal Safety Collaborative
5th June 2019
Rachel Corry & Karen Mainwaring
Working together to provide the highest standard of care for babies and families
What is a PAG?
&
Why are they important?

2. Why a Parent Advisory Group
(PAG)?

3. Why a Parent Advisory Group
(PAG)?
 Premature and sick babies can’t speak.

4. Why a Parent Advisory Group
(PAG)?
 Premature and sick babies can’t speak.

5. Why are PAGS important to
NWNODN?
To ensure network is focused on the care of the baby
and family!
 Baby born prematurely or sick - taken away soon after birth.
 Arriving in the neonatal unit &watching staff care for their
baby can make parents feel like they aren’t doing what parents
should do for their baby.
 Some parents feel helpless and worried. (Bliss website)

6. NW Neonatal ODN PAG

7. NW Neonatal ODN PAG
1st formed 2008

8. NW Neonatal ODN PAG
1st formed 2008
Improvement

9. NW Neonatal ODN PAG
1st formed 2008
Improvement
Somethings
bothering us –
can we chat?

10. NW Neonatal ODN PAG
1st formed 2008
Improvement
We’re here
to help
Somethings
bothering us –
can we chat?

11. NW Neonatal ODN PAG
1st formed 2008
Improvement
We’re here
to help
Somethings
bothering us –
can we chat?
We can help to design family
friendly leaflets/information

12. NW Neonatal ODN PAG
1st formed 2008
Improvement
We’re here
to help
Somethings
bothering us –
can we chat?
Our chair is a
member of the
neonatal Board
We can help to design family
friendly leaflets/information

13. NW Neonatal ODN PAG
1st formed 2008
Improvement
This is how it
felt for us and
our friends
We’re here
to help
Somethings
bothering us –
can we chat?
Our chair is a
member of the
neonatal Board
We can help to design family
friendly leaflets/information

14. How have the PAGs developed?
• 2013 change to networks
• Opportunity to build on GM PAG
• Support from Karen Williams - Bliss
• Establish C&M PAG
• Work with families in L&SC
More than established members of NSG
• Integral part of wider NWNODN team
• Contributing across all aspects of NW neonatal care
• So privileged to have PAGs & work alongside them

16. Why did I get involved in the PAG? (1)
 Before our neonatal
experience I presented on
stillbirth/late miscarriage to
the local MIDSOC
 Positive feedback
 I heard from other speakers
on how passionate they were
in trying to prevent stillbirth
and miscarriage
This made me realise that patient/parent feedback can
make a difference to medical views and practices

17. Why did I get involved in the PAG? (2)
 Hugo spent 217 days in hospital
- 156 days in NICU and 61 days
in LNU
 He had cardiac surgery and
bowel surgery at Alder Hey
 We had a wide range of
experiences, some really
positive, others less so
 We wanted to improve things
for others

18. Who are the PAGs?

19. What we do to support the
network – work programmes:
We take an active role in a number of
NWNODN work programmes, including:
 Family Integrated Care working groups
 Initiatives to support and sustain
breastfeeding
 Perinatal Mental Health in the
neonatal context

20. What we do to support the network
- conferences:
 We talk about our experiences
at conferences. These have
included:
 The Maternity & Neonatal
Learning System
 The Senior Neonatal Nurse
Learning Conferences
 The UK National Neonatal
Transport Group
Conference

21. What we do – local units
 We carry out surveys for local units, for
example on parent views on tube feeding
babies at home
 We provide input into research proposals and
parent information, both directly and via the
Maternal & Fetal Health Research group
 We have direct input to major research
projects through Patient and Public
Involvement

22. What we do – recognising parent
needs:
 We have developed
“Hey, it’s OK…” – a
document to reassure
parents struggling with
life in the neonatal unit

23. What we do – recognising parent
needs
 We have developed support
groups:
 “Wire Warriors” for the
Warrington area
 The Greater Manchester PAG
facebook group
 We support other local groups
 We work very closely with local
charities such as SPOONs

24. What we do – nationally:
Members of our PAGs are keen to make a
difference at a national level and have
been involved in activities such as:
 National Neonatal Peer Reviews – visiting
and assessing neonatal units across the
country
 Neonatal Stakeholder Events
 Bliss Baby Charter Assessments
 RCPCH National Neonatal Audit
Programme – parent rep
 BAPM trainees study days

25. How has being in a PAG helped me?
 I feel that I’m helping to improve neonatal
services
 I’m giving something back to the people and
places who took care of Hugo and the rest of
our family
 It’s given me the confidence to speak out
nationally about the parent & family
experience
 I now know how to campaign for change at a
national level about issues that impact ex-
neonates years after their discharge from
hospital

26. …in partnership
we are enhancing
Neonatal Care
in the North West
Thank you for
listening how…