1. National Network of Parent Carer Forums ‘Our Strength is our Shared Experience’ Parental Engagement and Confidence

2. 1.Context 2.NNPCF 3.Next steps

3. 1. Context

6. Unique journey of parent carers Early Stage: anxiety and effort to secure diagnosis; shock and feelings of helplessness; denial; guilt; crisis as life will now be different; eagerness to put child in hands of expert; isolation. Middle Stage: coping with conflicting advice; realising things cannot always be fixed; noticing unsustainable physical and emotional effort; ; emergence of chronic sorrow; navigating service systems; exposure to disability discrimination and lack of opportunities. Later Stage: reframing ‘normality’; drawing on range of expertise; developing confidence; connecting with other families; advocating for services.

7. Two perspectives in one

9. 2. NNPCF

10. NNPCF : reminder shared values Open to all parent carers Pan disability- Across all disabilities and conditions/spectrums Children/young people aged 0-25 years All sectors of community (BME, faiths, LGBT and other minorities) Issues across service boundaries (health, education, social care, and leisure) Urban and rural

12. Who are we? A network of 151 local forums into 9 regions Steering group of 9 regional representatives Up to 3 non regional Democratic process begins this term Transition period and wise use of a scarce resource Expectation that additional commissioned work is resourced (rates agreed this week) Basic funding through Parent Participation Strategic Partner Contact a Family: Sue North, PP Director

13. What we do? Network 151 local forums into 9 regions Use a solution focussed approach Provide a national focus for parent participation Model and grow participation at all levels Build good practise resources Three way communication – updates (local, regional, national) Contribute with partners to building a participative community!

14. What works and makes a difference Meaningful parent carer participation; from planning through to implementation and beyond Holistic and whole family Build on good practice; share where involvement has made a difference Invest in parent carer training and support Honest and transparent communication using clear and simple language Joined up planning, delivery and monitoring Information and people with insider knowledge Proactive; being prevention minded, building resilience Responsive services; will listen and respond Solution focussed: skilled network of parent carers working in partnership with skilled, creative practitioners and commissioners Top 10 tips!

15. 3. Next steps

16. Next Steps Good practise Parent Carer Participation All pathfinders and grant holders Linking between grant holders All levels Across service boundaries Fair and safe (governance and policies) Sustainable practise

17. Thank you Website: www.nnpcf.org.uk Email: info@nnpcf.org.uk