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.
Similar a Karen Mainwaring and Rachel Corry - Maternity and Neonatal Learning System: patient and public involvement in improving maternity services (20)
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Karen Mainwaring and Rachel Corry - Maternity and Neonatal Learning System: patient and public involvement in improving maternity services
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?
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)
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
15.
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
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…
Notas del editor
Premature babies can’t speak
They can communicate – “Not now I’m sleeping”
But they obviously can’t tell us in the broader sense what care was like for them and how it could be improved.
We also understand that we care for the family not just the baby
Hearing rom parents would help with care for the baby and the family
Premature babies can’t speak
They can communicate – “Not now I’m sleeping”
But they obviously can’t tell us in the broader sense what care was like for them and how it could be improved.
We also understand that we care for the family not just the baby
Hearing rom parents would help with care for the baby and the family
Premature babies can’t speak
They can communicate – “Not now I’m sleeping”
But they obviously can’t tell us in the broader sense what care was like for them and how it could be improved.
We also understand that we care for the family not just the baby
Hearing rom parents would help with care for the baby and the family
Premature babies can’t speak
They can communicate – “Not now I’m sleeping”
But they obviously can’t tell us in the broader sense what care was like for them and how it could be improved.
We also understand that we care for the family not just the baby
Hearing rom parents would help with care for the baby and the family
What we know – Bliss
I haven’t experienced that – though I have watched families journey through it feeling I had a sense of it
Reality is – I only scratched the surface.
I don’t know what it feels like or what would be helpful for families in their situation.
Whether it is a cup of coffee a friendly face a comfortable chair to sit in
Whether families want to speak to nurses doctors etc.
Increasing awareness of the need to look to the public and service users to support the delivery of high quality services.
1st started in 2008
Parent volunteers
Had babies in NNUs in Greater Manchester
Understand having a premature /sick baby is traumatic
Aim was to:
Enable families to put forward ideas for improvement
Raise needs or concerns to GM Board.
Act as a Network resource when input required /changes developed to improve neonatal care.
By:
Providing the Board views & perspectives of parents & families
Working with Network Board to improve services
Helping to design communications and information leaflets for parents
Increasing awareness of the need to look to the public and service users to support the delivery of high quality services.
1st started in 2008
Parent volunteers
Had babies in NNUs in Greater Manchester
Understand having a premature /sick baby is traumatic
Aim was to:
Enable families to put forward ideas for improvement
Raise needs or concerns to GM Board.
Act as a Network resource when input required /changes developed to improve neonatal care.
By:
Providing the Board views & perspectives of parents & families
Working with Network Board to improve services
Helping to design communications and information leaflets for parents
Increasing awareness of the need to look to the public and service users to support the delivery of high quality services.
1st started in 2008
Parent volunteers
Had babies in NNUs in Greater Manchester
Understand having a premature /sick baby is traumatic
Aim was to:
Enable families to put forward ideas for improvement
Raise needs or concerns to GM Board.
Act as a Network resource when input required /changes developed to improve neonatal care.
By:
Providing the Board views & perspectives of parents & families
Working with Network Board to improve services
Helping to design communications and information leaflets for parents
Increasing awareness of the need to look to the public and service users to support the delivery of high quality services.
1st started in 2008
Parent volunteers
Had babies in NNUs in Greater Manchester
Understand having a premature /sick baby is traumatic
Aim was to:
Enable families to put forward ideas for improvement
Raise needs or concerns to GM Board.
Act as a Network resource when input required /changes developed to improve neonatal care.
By:
Providing the Board views & perspectives of parents & families
Working with Network Board to improve services
Helping to design communications and information leaflets for parents
Increasing awareness of the need to look to the public and service users to support the delivery of high quality services.
1st started in 2008
Parent volunteers
Had babies in NNUs in Greater Manchester
Understand having a premature /sick baby is traumatic
Aim was to:
Enable families to put forward ideas for improvement
Raise needs or concerns to GM Board.
Act as a Network resource when input required /changes developed to improve neonatal care.
By:
Providing the Board views & perspectives of parents & families
Working with Network Board to improve services
Helping to design communications and information leaflets for parents
Increasing awareness of the need to look to the public and service users to support the delivery of high quality services.
1st started in 2008
Parent volunteers
Had babies in NNUs in Greater Manchester
Understand having a premature /sick baby is traumatic
Aim was to:
Enable families to put forward ideas for improvement
Raise needs or concerns to GM Board.
Act as a Network resource when input required /changes developed to improve neonatal care.
By:
Providing the Board views & perspectives of parents & families
Working with Network Board to improve services
Helping to design communications and information leaflets for parents
Increasing awareness of the need to look to the public and service users to support the delivery of high quality services.
1st started in 2008
Parent volunteers
Had babies in NNUs in Greater Manchester
Understand having a premature /sick baby is traumatic
Aim was to:
Enable families to put forward ideas for improvement
Raise needs or concerns to GM Board.
Act as a Network resource when input required /changes developed to improve neonatal care.
By:
Providing the Board views & perspectives of parents & families
Working with Network Board to improve services
Helping to design communications and information leaflets for parents
Increasing awareness of the need to look to the public and service users to support the delivery of high quality services.
1st started in 2008
Parent volunteers
Had babies in NNUs in Greater Manchester
Understand having a premature /sick baby is traumatic
Aim was to:
Enable families to put forward ideas for improvement
Raise needs or concerns to GM Board.
Act as a Network resource when input required /changes developed to improve neonatal care.
By:
Providing the Board views & perspectives of parents & families
Working with Network Board to improve services
Helping to design communications and information leaflets for parents
Rachel will share the detail of how they help support the NWNODN/what they have done/do.
NW networks changed in 2013 to become NWNODN
Opportunity to build on PAG in GM and with support from Karen Williams – Bliss establish in C&M and work with parents in L&SC
NWNODN has two PAGs, covering the Greater Manchester area and Cheshire & Mersey area. We work both separately and together on different projects and initiatives
FiCare – we have had input into the network-wide Parent Passport and how the parents can get involved in their baby’s care from an early stage
PMH - – we have taken an active role in designing training courses for staff to help understand & identify where neonatal parents need support with their mental health