I’ve asked—begged—for help so much it’s hard to be concise. I had to beg for anyone to see him when he was a baby failing to thrive, even now with two rare genetic syndromes, learning disabilities, and complex medical needs, I have to keep begging for the most basic support. I can’t just be a parent. I spend my life fighting systems that misapply their own rules, reducing my son to lists of deficits and forcing me to relive trauma. His pain has been ignored, his needs minimised, his education rights denied, and his health left to deteriorate. Too often I’ve been told to accept support that doesn’t meet his needs, to prove the risk by allowing harm before anything better is put in place. What little we’ve patched together feel constantly under threat. There’s never a moment to breathe.

The harm has been relentless

I’ve had to watch my child suffer avoidably. I’ve had to give up work and become an unpaid carer. My health has suffered from the exhaustion, stress and the constant anxiety. I don’t feel safe to trust professionals—the bad ones are bad and the good ones burn out from the stress of the system and leave. The endless battles have taken time and energy from my son and from simply being able to enjoy him for who he is. Every meeting, every form, every tribunal forces me to relive trauma. To focus on the most painful aspects of my son’s disabilities and to reduce him down to little more than lists of deficits. It is dehumanising and I feel complicit.

What could have been done differently

I wish services had listened and acted the first time, instead of forcing me to prove need by allowing harm. I wish they had trusted the evidence of other professionals. I wish they had followed the law and their own professional standards. I wish they had seen my son as a whole child and worked with us to build on his strengths while meeting his needs. I wish they had been honest about service cuts and what they could and could not provide, instead of twisting evidence and gaslighting me. Most of all, I wish support had come without a fight, so I could spend my energy being a Mum and not a caseworker.

Advice to public service leaders

If you want things to get better, you have to face how bad they are now and stand with families. Be honest about what you can and cannot provide and don’t twist evidence or gaslight families about their child’s needs and rights to cover for a broken system.

Cerebra’s report on Systems Generated Trauma is so important

Because it names what so many families live through but rarely see acknowledged. We go to services because our children need help, but instead of being supported, we’re often traumatised and retraumatised. The harm isn’t just in what our children face because support is missing, but in the constant battles, the exhaustion, and the way trust is eroded. Trauma has become baked into the system—almost an accepted by-product. It keeps service failures hidden and shifts the blame onto families, turning us into the “problem to be managed.” This trauma destroys families and also many professionals working inside these broken systems. We need to name this honestly and that is why your report matters.