In Conversation with Jo Harrison and Sarah Clarke, Directors and Co-Chairs of the NNPCF.
Behind every SEND policy are families whose experiences shape the conversation. Across England, parent carer voices influence how services are designed, delivered and improved. In this interview, we speak with Jo Harrison and Sarah Clarke about how lived experience moves from kitchen-table conversations to national decision-making, and why collective parent voice is central to meaningful change.
Could you start by telling us a little about the NNPCF, who you are, what you do and how you work with families?
The National Network of Parent Carer Forums (NNPCF) brings together parent carer forums from across England to make sure the lived experiences of families inform decisions on SEND policy and practice. Our network represents approx. 185,000 members and continues to grow, of parents and carers who share their experiences to help shape better outcomes for children and young people with SEND.
Parent Carer Forums (PCFs) work locally and regionally, feeding this information into NNPCFs national work. PCFs co-produce with families and stakeholders in their local areas, while we represent those collective voices to national decision-makers, including the Department for Education, NHS England and Ofsted. Everything the NNPCF does is about partnership: ensuring that families' lived experiences are not just heard but actively shape the design and delivery of SEND services.
What Parents Want to Know
"I don’t always feel confident speaking up at meetings. What support is there for parents who want to be involved but don’t know where to start?"
You don’t have to be an expert or a public speaker to get involved; your experience as a parent carer is what matters most. Local forums offer friendly, welcoming spaces where you can start by simply sharing your experiences, sharing your views on surveys, or attending events such as coffee mornings. Many forums offer training, mentoring, or buddy systems to help parents feel more confident and supported in having their voices heard.
"When local authorities make changes to SEND services, it often feels like we only hear about it afterwards. How does NNPCF make sure parent voices are included before decisions are made?"
NNPCF do not work with Local Authorities; that is the role of the local Parent Carer Forums. They are strategic partners and work in a solution-focused way. They work with local authorities, health partners and education leaders. At a national level, the NNPCF works with government departments to ensure that families’ voices, as represented through their local Parent Carer Forums, are part of national policy development.
"Are there any examples of something that changed because parents spoke up through their local forum or the NNPCF?"
Absolutely. Parent carer forums have helped shape local SEND strategies, influence the design of short breaks and transport policies, improve local offers and information events, and co-produce inclusion policies with schools and councils. Nationally, the NNPCF has helped shape key reforms such as the PINS (Partnerships for Inclusion of Neurodiversity in Schools), National Key working Programme, and the SEND and Alternative Provision Improvement Plan, where the NNPCF are part of the National Change Programme for SEND, and Parent Carer Forums, work in their local areas on the programme ensuring that parent voice is reflected in national and local priorities and accountability frameworks.
"Caring for a child with severe learning difficulties takes up most of my time. I’d like to get involved and share my experiences, but it often feels impossible to find the time. What would you say to parents in my situation?"
We completely understand. Many of us are in similar positions, caring for children and young people who need intensive care and support. Local Parent Carer Forums offer flexible ways to get involved, from completing an online survey to attending a virtual meeting or a local coffee morning, to sharing feedback through a short chat. Some parents feel able to contribute more regularly and will look to be a parent representative and attend meetings with the local authority, representing the views of local families, while some may want to engage with the running of the forum. Every contribution matters, no matter how big or small. Even sharing five minutes of your time to share your experience can help change how services are designed.
"I care for children from different cultural backgrounds. How do you make sure families like ours are fully heard and represented?"
Representation and inclusion are core values for every local parent carer forum and we also ensure that at a national level, we are diverse in our representation. Forums work actively to reach families from all communities, recognising that experiences and barriers can differ. Diverse voices and seeking partnerships with community groups to make sure participation is accessible and culturally sensitive are essential to ensure parent carer forums are reflective of families in their local area.
Misconceptions
Some people think parent forums only focus on problems and complaints. How do you balance raising concerns with celebrating what’s working well?
Parent Carer Forums' role is to bring constructive challenge in a solution-focused way; highlighting what needs to change, while also recognising and sharing what works. Celebrating good practice is just as important as identifying gaps. Forums regularly share success stories, co-produced projects, and examples of improvement, helping build stronger relationships between families and professionals.
There’s a perception that parent forums are just for parents of school-aged children. How do you include families with younger children or those in post-16 settings?
Parent Carer Forums represent families from birth to 25, as per the SEND Code of Practice. They work closely with early years, post-16 and preparing for adulthood services, as well as those who are school-aged, to ensure the full age range of 0-25 is reflected in our work. Many forums have dedicated representatives for early years and post-16 to make sure those voices are heard in local discussions, as does the NNPCF at a national level.
Some assume that getting involved means taking on a big commitment. How flexible is participation for parents who already have a lot on their plates?
Parent Carer Forums are designed to be flexible. You can contribute as much or as little as you’re able, from completing a quick survey to joining a working group or representing parents at meetings. There’s no one-size-fits-all approach. Every level of involvement helps strengthen the collective voice of families.
What would you say to people who see parent forums as just discussion groups rather than places where real change happens? How do you show parents that their voices genuinely make a difference?
Parent Carer Forums are part of formal local and national governance structures, not just discussion groups. Forums have no power to enforce change, but parent carer input can and does directly influence strategies, commissioning decisions, and policy direction. Forums frequently share “you said, we did” examples showing how parent feedback has led to tangible changes, from redesigned pathways to new approaches to co-production. However, change can often be slow, and it may seem that nothing is happening from the outside.
Forums are also required to work on priorities set within a local area, such as those following a Local Area SEND inspection, which may differ from the priorities that the forum hears from families. Due the grant funding forums receive, there are also restrictions on how forums can represent the discussions they have with stakeholders for example Parent Carer Forums are not able to campaign like many organisations, as a key part of the way forums work is to build trust and strong relationships in order to be able to have robust conversations and work in participation and co-production and that results in positive change.
What You Wish Parents Knew
What do you wish more families understood about how SEND decisions are made and how much influence they actually have?
SEND systems are complex, and change often takes time, but parent voice genuinely makes a difference. Decisions are shaped through partnership, and the more families share their experiences, the stronger and more representative that influence becomes. Forums provide a bridge between individual experiences and system-level change.
If you could share one message with every parent carer reading this, what would it be?
Your experience and voice matter. Whether you share it through your local forum, a survey, or a conversation with a professional, your experience helps shape a better system for all families. You’re not alone, and together, parent carers are driving meaningful change.
Advice for Parents and Carers
For parents who want to make a difference but don’t know where to begin, what’s the first step?
Start by connecting with your local parent carer forum. You can find them on the Contact website, the NNPCF website or through your local authority’s Local Offer. Introduce yourself, share your experiences, and see what opportunities there are to contribute; no pressure, no commitment. Just being part of the conversation is a powerful first step.
What’s your advice for parents who feel unheard or worn down by the system?
We know how exhausting it can be. The SEND system can feel overwhelming and slow to change. But joining your local forum connects you with others who understand, and together you have a stronger voice. Change is more likely when families speak collectively, work in participation and co-production, supported by a network that knows how to influence decisions.
How can families work with their local forum without feeling like they have to be experts in policy?
You don’t need to know the policy; you are the expert in your child and your family’s experience. Forums can translate that lived experience into the language decision-makers understand. A Forum's job is to make sure your insight informs the system, without expecting you to navigate all the policy details yourself.
Looking Ahead
What’s next for the NNPCF, and how can families stay involved in shaping SEND policy where they live?
The NNPCF are continuing to work closely with national partners, ensuring that the parent carer voice remains central to how reforms are delivered and monitored. Locally, forums are strengthening their partnerships with education, health and care to drive consistent co-production.
Families can stay involved by joining their local forum and continuing to share their lived experiences. Every voice adds strength to the collective message: that all children and young people with SEND deserve the right support, at the right time, to thrive.
Jo Harrison |
Sarah Clarke |
Disclaimer: The views and opinions expressed in this interview are those of the individual or organisation featured and do not necessarily represent or reflect the position of SEND EDventures.
