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25th March 2014
Welcome
• Your hosts – Manchester Trafford and
Wigan welcome you to our 3rd
conference.
• Supported by Mott MacDonald, DfE,
CDC, Early Support, NNPCF, PfA
• Who is in the room today?
• No expense spared name badges!
• Post – it notes for questions
Agenda
9:00
9:45
10:00
12:00
Registration for Morning and All day
Delegates
Workshop 1
12:00
13:30
Lunch – Premier Suite
13:30
15:30
Workshop 2
15:30
16:30
Networking
Further Information
• All presentations from today will be made
available on the SEND Pathfinder website:
• www.SENDpathfinder.co.uk
• This website is also where the Information
Packs can be found.
• Evaluation forms – will be sent to you via
email
ENGAGEMENT AND
CO-PRODUCTION WITH
PARENTS AND CARERS
Geraldine Hills, Manchester
Andrew Robinson & Keelie Right, POINT, Oldham
Andy Simpkins, Stockport,& Sherann Hillman (Stockport& NNPCF)
Nicky Montes, Trafford
Louise Reecejones, Wirral
Dr Cathy Hamer, Early Support
WORKSHOP OUTCOMES
To provide participants with tools, tips and practical
examples of engagement and co-production with key
stakeholders focusing on engagement with parents and
carers
To provide an opportunity for networking and sharing
learning, experience and practice
PUTTING
CO-PRODUCTION IN CONTEXT
Pre 2000 models of parent partnership considering
relative roles of parents and professionals:
Expert, transplant, consumer, empowerment,
negotiating
Early 2000s: Support partnerships, Team around
the child
2006: Parent participation in partnership with
practitioners – an evolved model
METHODOLOGY: SHARP
St Helens Action
Research Project
Wishing on a
star
Stakeholder
event
Questionnaire
Parent researcher
training
Research
activity:
Service audits
Interviews. Visits.
Case studies
Second
Questionnaire
Focus group
Interviews
Research activity:
Evaluating Early Support
ALS
records
Action Learning
Set
Service model
THE JOURNEY TO
PARTICIPATION
Engagement
Partnership
Contribution
Empowerment
Involvement
THE JOURNEY TO
PARTICIPATION
Partnership
Contribution
Empowerment
Engagement
Involvement
Hamer, 2006
AN EVOLVED MODEL:
KEY CONSTRUCTS
Involvement: By association rather than choice
Engagement: A level of activity either something is
required or want to find out more
Empowerment: Sharing of knowledge and skills –
respected as equals
Contribution: Lived, personal and acquired experiences
Partnership: Reciprocal collaboration. Joint ownership of
service design
A partnership process where parent carers are
valued members of a team shaping and
delivering services for families of children and
young people with special educational needs
and/or disabilities.
‘Effective parent participation happens when
parents have conversations with and work
alongside professionals in order to design,
develop and improve services’.
DRAFT SEN CODE OF
PRACTICE
Local authorities must ensure that parents,
children and young people are involved in
discussions and decisions about every aspect of
their SEN, planning outcomes and making
provision to meet those outcomes, and in:
• Planning and reviewing the local offer
• Reviewing special educational provision and
social care provision
• Drawing up individual EHC plans, reviews and
reassessments
CO-PRODUCTION
Co-production is when all team members together
agree outcomes, coproduce recommendations, plans,
actions and materials as a collective. It is an
approach which builds upon meaningful participation
and assumes effective consultation and information
sharing. In its essence, co-production is a dynamic
group process and happens in the room when there
is equal value for each participant’s contribution and
when there is a meaningful proportion of participants
who are service users (in this case parent carers)
present.
Ref: Co-production with parents carers: the SE7
experience. www.se7pathfinder.co.uk
CO-PRODUCTION:
ACTIVITY
What are your 3 key challenges in
relation to co-production with parent
carers?
CHALLENGES IDENTIFIED
Capacity of parent/carers. Time and capacity.
Funding
Managing parent expectations/perceptions with limited resources
Establishing clear communication channels. Cultural change of working together
Ensuring that a wide range of parents are involved consistently
Personal vs group agendas.
Communication barriers between parents
Equal representation.
Rather than own agenda remain ‘open’
Expectations.
Confidence to join in .
Breadth of involvement (to get different perspectives)
Knowing how a parent can be involved.
Broad prepresentation.
Each parent has their own agenda but must remain mindful of others’ agendas
Time constraints / Responsibilities.
Range of engagement.
Different requirements
Turnover of staff who may not be used to partnership working.
Parents to get more involved where possible
Tension between personal agenda and wider focus.
Fair representation. Reality vs expectations. Equality of opportunity
Appropriate times for communications (meetings etc). Accessible information. Genuine trust in partnership
How do you include the view of all parents equally. As priorities are so different. Time to get everyone together.
Getting all professionals in one meeting. Being listened to! Understanding that our children are not a one size fits all
Co-production may fall down on funding / time
Cherry picking. Hiding behind confidentiality. Patronising – not giving credence to parents. Not listening/manipulation
Managing change in context of range of previous experiences
Trust. (parents of professionals and vice versa).
Knowledge of what’s available
Change – services not wanting to change.
All services not understanding the meaning of co-production.
Local Authorities are too slow to react to individual or family needs
Priorities for health, schools and social care.
Who would ensure that parents are heard equally
Parents needs to consider restrictions of the Local Authority.
How can we measure ‘equal value’
Closed shop history.
Do, then ask (false consultation).
Mutual respect.
The distance is takes for everybody to get together.
Time!
Structures that promote co-production (or lack of).
Lack of enough parent carers participating considering how huge our area is.
Lancashire is a huge are with 12 districts so this causes problems in terms of everybody getting together.
DELIVERING EARLY
SUPPORT PARENT CARER
WORKSHOPS - LOUISE
REECEJONES
Workshop
world
Workshop
Workshop
disability
Workshop
Workshop
1: Understanding this unknown
2: Changing relationships
3: The child beyond the
4: Ordinary lives?
5: Growing up, moving on
QUOTE FROM A PARENT
The workshop made a big difference to my life, I am able
to go to school meetings and understand what’s
happening. I feel so much more confident and proud of
myself for not crying any more.
Thank you so much, you will never understand how much
you have changed my life.
YOU’RE THE EXPERT
Expert parent programme:
http://www.councilfordisabledchildren.org
.uk/what-we-do/workthemes/health/practice-andprojects/expert-parent-programme
The Expert Parent Carer
Unique
Toolkit
knowledge of
Knowledge and
information
about condition
A clear vision of
what you want for
your child and the
outcomes you hope
will be achieved
Knowledge of
where to go
and who to ask
Understanding of use
of language,
terminology and how
to get heard
your child
Respectful and
effective
partnership with
professionals
Confidence to
question, share
concerns and
inform
professionals
Knowledge and
understanding of the
rights of your child
within the NHS
Strategies to get
the most out of
time spent with
professionals
Education Health Care Plan
Working Together
Geraldine Hills, Manchester
Working Together:
Boundaries and expectations
• What’s mine is yours
• You’re not my mate
– don’t put yourselves/parents in a difficult
position
• Help parents/professionals to
understand
Working Together:
Dealing with difficult relationships
• Think about what you want to say
• Think about how the person is going to
hear what you say
• Then rethink what you want to say...
...so they will hear what you want them
to hear
no jargon please!
Working Together:
Communicating
• Even if you don’t like what a
parent/professional is saying, listen,
because being patient and allowing them
to finish shows respect
• Expect the same for yourselves
The Formula
Clarity + Brevity = Impact
• Clarity:
• Brevity:
• Impact:
Message easily understood
Get to the point
What you say will be remembered
25
Information
• We all know something you don’t!
• Don’t assume parents/professionals know
• Pass it on
Consultation and Influencing
What you can do
• Be understanding - this is new for parents/professionals as
well
• Manage parents fear & expectations
• Communicating your own concerns
What parent have been doing
• Parent Forums (Manchester Parents for Change)
• Drop ins / Resource centre
• Conference
What Manchester has been doing
• Training for parents:
• Getting your message across
• confidence & resilience
• Some school s have also commissioned this training
• Co- talks and training with parents and Parent Partnership
Andrew Robinson & Keelie Rigby
Chair & Vice Chair
Parents of Oldham in Touch
A BRIGHT FUTURE
Achievement
Mutual
Agreement
DEAD END
Frustration
Shared Plan
Collaboration
Mis-trust
RISK
Apprehension
Pathfinder
Manageme
nt Board
Learning
Disability
Partnership
Board
Oldham
Parent
Partnership
Sevice
SENDirect
Pathfinder
Board
Members
Short
Breaks
Steering
Group
Autism the
way
forward
Group
SEND
Partnership
Board
CCG
Equality
and
Diversity
Board
Members
0-25
Decision
Making
Panel
OUR TOP TIPS TO ACHIEVE CO-PRODUCTION
• Be confident… Honest… and Direct! You have a lot to offer and
know your stuff!
• Be prepared to understand the opportunity and take risks!
• Accept everyone has their strengths… and not everyone can do
everything.
• Be willing to compromise where necessary.
• But most of all… challenge… revisit… and remind everyone that
co-production is KEY if we are going to deliver better life chances,
aspirations and a person centred approach.
Parents in Partnership
Stockport PIPS
SHERANN HILLMAN PIPS
&
ANDY SIMPKINS SMBC
Stockport’s Parent Carer Forum is a parent led
constituted group for parents, carers & family
members who have children or young people in
Stockport with disabilities or additional needs.
We work with parents, Carers and local
organisations in Stockport (statutory, voluntary,
private and independent ) to assess, develop,
maintain and improve what their children and
young people receive.
•
•
•
•
•
•
Founded in 2007
Constituted group since 2013
Steering Group
Parent Representatives
Ambassadors
Membership & Associated Members
SEND Reforms non pathfinder
Second phase 0-25 transformation
programme
. History First phase
Programme managers
• Currently rolling out of the second phase
• Design authority
• Project Leads
• Dedicated work streams
• PIPS & wider family involvement
Stockport’s Work streams:
1.
2.
3.
4.
5.
6.
7.
8.
CAF/ TAC/ EHC One Common Process
Education Design Schools and LA
Vocational and Employment Pathways
Aspirational Early Years Offer
Personal Budgets
Travel Assistance Policy
Local and Community Offers
Health and Care Pathways
Next Steps
• Work streams
• Blue Print
• Consultation
Lessons Learnt over the last 2 years
• Don’t rush into things - co-production takes time.
• joint parent carer and professional training to challenge
legacy working.
• Ensure commitment of staff at all levels.
• Ensure parent representative sit on each work stream and
are included in all meetings.
• Don’t make decisions and progress work outside of
meetings without buy in from all partners.
• It is important to contextualise coproduction and think of
ways to work together within the existing boundaries, for
example, everyone can’t always be sat round a table,
“Coproduction is about working together to find new
ways of working. It is about hearts and minds and
embedding the process in design, development and
delivery” …
“It is important to take a step back and understand
what it actually means to co-produce and how you
know when you have successfully done so. It is not
about having lots of meetings with lots of different
people, it is about the outcome of those meetings
and the benefits it brings to ensuring parents carers,
children/ young people are at the heart of what you
do”.
Sherann Hillman Stockport PIPS
Something to take from today
•
•
•
•
Can
Can
Can
Can
you
you
you
you
really sense it
see it
feel it
touch it
Sherann Hillman Co-Chair & North West
Representative
The National Network of
Parent Carer Forums
 Membership - NNPCF is made up of all local parent
carer forums in England, and have a remit to ensure
strategic parent carer participation at a national level.
We act as a conduit between local forums, the regional
networks and national strategic partners.
 Steering Group - is made up of a selected regional
representative from forums across the England regions
who participate nationally in the same way that local
parent carer forum representatives represent locally.
 Constituted -parent led and managed organisation and
work closely with Contact a Family who are contracted
to provide support to parent carer forums.
NNPCF are involved in working
with a broad range of partners
NNPCF are involved in working with a broad range of
partners, which include:
 Contact a Family & Contact a Family Health Project
 Department of Education & Health, DfE Programme
Board & Implementation group
 Council for Disabled Children, National Parent Partnership
Network, Preparing for Adulthood, Every Disabled Child
Matters, Early Support, Special Educational Consortium
(SEC), Achievement for All
 Short Breaks Network
 National Link Group
 British Academy of Childhood Disability
 James Lind Alliance
 Mott MacDonald – Pathfinders
 IPSEA
 In Control
Here is a glimpse of who we are
co-producing and working in
partnership with currently
•
•
•
•
•
•
•
•
•
•
•
•
•
CDC Partnership board & CDC Council, EDCM
SEND Strategic Advisory Group (SEND SAG) & Implementation
Board
Early Support Advisory Group
National Delivery Partner Meetings
Parent Carers Rights – Amendment to the bill, working on
guidelines
E-Learning Disability Portal
Code of Practice
Mott – ALN meetings – All
National Voices
SEND Task & Finish Groups –writing national guidance &
Challenging behaviour
SEC Parliamentary, Steering group & Post 16
British Association of Childhood Disabilities
POET
Participation in the Children
& Families Act and SEN Code
of Practice
Ensuring the participation of parent carers is an
underpinning principle of the Children and Families Act. It
is helpful to consider this as two distinct aspects
• 1 – the individual participation of children, young people
and their parent carers in their own assessments, plans
and support and subsequent reviews of these.
• 2 – the strategic participation of children, young people
and parent carers in local (and national) service design,
delivery and evaluation.
 Recognition-The importance of
Parent Carers
 Validation -Individual parent
carers and forums.
 Strength -Our strength comes
from our shared experience
Responsibility
New
Beginnings
Where to find more
information
 Ref: Markers of good practice in building Parent
Carer Participation: Working effectively with parent
carers www.nnpcf.org.uk
 You can find the details of local parent carer
forums, by going to www.nnpcf.org.uk
 You can find out more information about the work
of the National Network of Parent Carer forums by
going to www.nnpcf.org.uk/ email:
info@nnpcf.org.uk
 Follow us on facebook
https://www.facebook.com/NNPCF and twitter
@nnpcf
National Network of Parent Carer Forums
‘Our Strength Is Our Shared Experience’
Ref: Markers of good practice in building Parent
Carer Participation: Working effectively with
parent carers
www.nnpcf.org.uk
RESOURCES
Learning from Pathfinder parent carer forums
DfE 8.2.13
Good practice in working with parents of disabled children,
National Academy for Parenting Practitioners
Progress report of NNPCF Jan 2013
Participation framework SE7
Good guidance for running Focus Groups
Transforming participation in health & care
NHS England
Findings from parent carer forums in pathfinder
areas, NNPCF & CAF
ADDRESSING KEY
CHALLENGES
In the light of what you know
now how might you consider
overcoming the key challenges
identified earlier?
ADDRESSING KEY
CHALLENGES
Confidence. Empower people. Means to communicate. Strong parent carer forum
Communication! Become equal partners! SLA - Service Level Agreement (The piece of paper)
SLA or Terms of Reference
Using different types of engagement i.e. facebook, coffee mornings, etc. Creative thinking with funding.
Honest/compromise.
Meet with parents before writing any documents.
Communicate progress of the Programme Board to parents, young people, local organisations and STAFF.
Training for parents / carers. Pointers to engage parent/carers. Positivity.
Trust – Involve / Engage / Empower / Partnership
Training parents carers who have felt disempowered as true partners
Communication strategies (in notes).
Involvement through as wide a range of methods as possible – social
media.
Empowerment of parents / forums
Facebook for all parent members who are not always able to go to meetings.
Parents support parents with helpful contacts and tips.
Explore a wide range of media /’ channels. Confidence. Empowering people.
Parent training – right type of training.
Engaging wider range of parent / carers
Working in partnership with other organisations like CAF so there is an established line of support
Building trust. More joint events.
Joint training – parents and professionals learning together.
Making everybody understand how everybody is an important part and we all have a role.
To use the contacts that the local parents forum have with health to further develop co-production with all services
to develop EHC plans.
Face book / Twitter – wide range of media. Keep up to date.
Change opinions! Communicate and be open / honest.
Use parent forum money to enable reps to sit on working groups.
Awareness of political / resource context.
Shared responsibility for programme delivery.
Mutual trust.
Make sure it’s not about challenging but about working together positively.
KEEPING IN TOUCH
Dr Cathy Hamer
Mob: 0778 357 7284
Email: CWH01@hotmail.co.uk
Visit our website:
www.councilfordisabledchildren.org.uk/earlysupport
Find us on Facebook:
www.facebook.com/councilfordisabledchildren
Follow us on twitter:
@CDC_tweets