Nothing About Us Without Us: Why SEND Parents Must Shape the Services Their Children Rely On

When the System Isn’t Built With Families in Mind

You thought the landscape for SEND children was tough. But what about the parents? The long and winding road to any sort of acknowledgement of what needs their children have involve navigating endless paperwork, waiting lists, assessments, or being told that even after all this effort they go through – that there’s no provision. What if the people who know SEND children best were the ones helping design the services meant to support them? SEND services work best when parents, carers, and families are genuinely listened to.

Growing Up Without a System That Knew What to Do With Us

I wasn’t diagnosed as a child – not because there was nothing there, but because there was no clear system for my parents to be heard. From a very young age, they sensed I experienced the world differently. They did what many parents do: raised concerns, asked questions, and sought professional advice. Beyond an early referral to an educational psychologist, there was little wider support. No health visitor checking in. No consistent involvement from school. No clear pathway forward. Once diagnosis was set aside, my parents carried uncertainty alone, trying to make sense of behaviours and anxieties without guidance. The responsibility didn’t disappear; it shifted entirely onto them. They needed a system willing to listen properly.

Why Lived Experience Should Shape Service Design  

Experiences like my family’s don’t happen because parents fail to advocate hard enough; they happen because services are designed top-down, with too little input from those living the consequences. On paper, this creates consistency and efficiency. In reality, it overlooks everyday barriers: long waits, fragmented support, and the exhaustion of holding everything together alone. If my parents had been treated as partners from the start – not merely consulted, but genuinely involved – our trajectory could have been different. Early parent voice could have shaped support around real needs, not just academic attainment, and created continuity rather than silence. This is the difference between consultation and co-production: one gathers feedback, the other shares power and responsibility.

When Parents Are Ignored, Everyone Pays the Price

What happened to my family is not unusual – it is a pattern repeated across thousands of households. Across the UK, neurodivergent children who cope academically but struggle socially, emotionally, or organisationally are routinely missed or told to “wait and see.” Parents raise concerns early, only for a single judgement to close doors for years. What follows is limbo: doubt, repeated explanations, and transitions without support. Families manage escalating stress while being told nothing is wrong enough to act on. Support arrives at crisis points – school breakdowns, mental health deterioration, or late private diagnoses – rather than through prevention. This is not parental over-anxiety; it is the predictable outcome of a system that rations support.

A Different Way Is Possible: What Wolverhampton Is Doing Right?

This is why the launch of SEND Wolves Parent Voice in Wolverhampton matters so deeply. It shows what could have been, and what should now become standard. Rather than parents navigating concern, assessment, and crisis alone, the forum places families at the centre of service design, creating community, shared knowledge, and collective influence early. Backed by Wolverhampton Council and supported by national charity Contact, it gives parents space not only to be heard, but to shape how SEND services operate across education, health, and care. It recognises parents as experts long before thresholds are met or crises emerge. Had this existed earlier, my parents would have had validation, information, and routes to challenge gatekeeping. Its launch at Molineux symbolises partnership.

Listening Is Not Enough – Parents Must Be Partners  

For SEND Wolves Parent Voice to succeed, parent voice cannot be symbolic or optional; it must be properly resourced, respected, and embedded in decision-making. History shows the risk otherwise. The closure of Voice4Parents in 2025 was not a failure of families, but of sustainability and support, and SEND Wolves Parent Voice must learn from that legacy. Resourcing means funded coordination, accessibility, protected budgets, and recognising that parent representatives contribute skilled labour, not casual volunteer time. Respect means genuine co-production: parent input shaping decisions before they are made, recorded, responded to, and acted upon, even when uncomfortable. When Councillor Jacqui Coogan said a strong parent carer forum is vital, that was a public commitment, to be honoured through transparency and investment.

What Happens When We Listen Early

I cannot change what happened to me — ten years undiagnosed, a childhood shaped by dismissal rather than support — but this story is not shared to invite regret. It is shared to demand urgency. Somewhere in the UK today, a five-year-old is being told they are “academically fine,” and a door is quietly closing that should never close. Wolverhampton shows another path is possible: parent voice resourced, respected, and embedded before children fall through gaps. The question is not whether this works — it does — but how quickly every local authority acts. Let my story drive action, nationally, decisively, and now.