When your child is first identified as having additional needs, nobody sits you down and explains how everything works. You get signposted to the school. The school mentions the GP. The GP mentions a referral. And you go home and search the internet at 11pm trying to figure out what any of it means.
This is not just your experience. It is almost everyone’s experience.
So, here is the short version of what you need to know:
The school must support your child right now, without waiting for a diagnosis. If your child is struggling, the school must put SEN Support in place. It does not need a diagnosis to do this. It does not need a referral. It needs to identify your child’s needs and act on them.
Your local authority (your council) is responsible for Education, Health and Care Plans (EHCPs). If your child’s needs are greater than the school can meet alone, you can ask for a formal assessment. You can make this request yourself; you do not need the school’s permission.
The NHS assesses and diagnoses, and a diagnosis can be valuable, but it does not automatically change what the school is required to do. Support should already be in place.
The SEND Tribunal is an independent body you can appeal to if the local authority makes a decision you disagree with. It is free to use.
Nobody tells you any of this at the start. Which is exactly why we made a reference card that lays it all out in plain English. You can download it here.