Our report, titled ‘Systems Generated Trauma: How disabled children and their families are traumatised by dysfunctional public services when they ask for support’, challenges the current narrative by shifting focus from family resilience to institutional failure. Based on compelling evidence from over 1,200 parents, the findings expose systemic, harmful practices across health, social care, and education that are leaving the most vulnerable families exhausted, isolated, and in profound distress.

Cerebra CEO Jess Camburn Rahmani stresses the urgency of the findings:
“There are moments in our work that stop us in our tracks. This report is one of them. It is a painful truth that many disabled children and their families are being traumatised—not by illness, not by accident, but by the very public services that are meant to be their lifeline. This is not a fringe issue. It is not rare. It is not acceptable. It is happening every day, in every corner of our society, and it is breaking people.”

Defining the harm

We define Systems Generated Trauma (SGT) as the severe harm caused by the hostile, relentlessly bureaucratic, and combative policies that families are forced to navigate when seeking basic support. Parents surveyed revealed that the experience of fighting these systems is often more distressing and traumatic than other significant traumatic events they have faced such as domestic violence, or mental health difficulties.

The harm caused to families is extensive, affecting their physical and mental health, causing significant financial hardship, disrupting education, and damaging family relationships. Shockingly, some parents reported that the relentless pressure had led to suicidal thoughts.
The emotional toll is immense with parents reporting:

“Having a disabled child is not the traumatic part. The trauma is seeking (or trying to seek) support from education, health and social care services. The past ten years of negotiating with these public services have completely and utterly changed me as a person”.

“My son, once a joyful young man, now lives in a near-constant state of hypervigilance. The impact has left him emotionally distant, unable to trust, and a shadow of the vibrant person he once was”.

“The way, as parents we were judged, irrelevantly questioned and made to feel like I was the problem, has left me with mental health scars to this day”

“We are not the same people. We are broken and traumatised. We cannot trust anyone anymore”.

Professor Luke Clements, the report’s co-author and Emeritus Professor of Law and Social Justice at the University of Leeds, explains the systemic nature of the problem:

“There is a profound lack of accountability in terms of public bodies being held to account for the harm caused by their defective administrative systems. Although the trauma created by public sector systems was unintended, the failure of governments and other public bodies to take purposeful remedial action when the system defects are identified, renders untenable any assertion of blamelessness: in social harm theory, inaction of this kind is best described as ‘moral indifference’.”

Call to action

The research report argues that meaningful change requires a transformation in how public services operate, fostering genuine partnership, empathy, trust, and accountability. We urgently demand that:

1. Systemic Trauma is Formally Recognised: Public services must formally acknowledge that their current systems cause trauma.
2. Research is Prioritised: Policymakers, funders, and academic institutions must commit to further research to understand the scale and impact of SGT, and to develop evidence-based solutions that actively prevent harm.

Ultimately, this report is important because it names what so many families live through but rarely see acknowledged. As one parent summarises:

“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 that is why this report matters.”

Jess Camburn Rahmani concludes:

“Asking for help should never cause harm—it is time to put a stop to Systems Generated Trauma.”

Find out more

Full details are available here: cerebra.org.uk/systems-generated-trauma. You can:

• Download the full report and the report brief
• Watch a video
• Hear from families who have shared what happened to them
• Share your experience of Systems Generated Trauma
• Sign-up to support our campaign and receive updates

The launch event

The report was launched on 18th November at Church House in Westminster. The speakers were:

• Baroness Jill Pitkeathley (Key Note Speaker): Jill Pitkeathley OBE is a peer in the House of Lords and a Deputy Speaker, known for founding the carers movement (Carers UK) and advocating on issues of carers, social care, and health.
• Jess Camburn-Rahmani (Cerebra CEO): Appointed CEO of Cerebra in 2024, Jess brings over 20 years of global humanitarian and charity sector leadership experience, focused on driving evidence-based system change.
• Professor Luke Clements (Report Co-author): Emeritus Professor of Law and Social Justice at Leeds University and lead researcher on the Cerebra LEaP programme since 2014. He is a key advisor on social care legislation.
• Mary Busk: A parent carer, co-founder of the National Network of Parent Carer Forums, and a former civil servant with deep lived experience of navigating complex support systems.
• Dr Luke Geoghegan: Director of Policy, Research, Public Affairs and Professional Learning at BASW – the British Association of Social Workers. He is a qualified social worker with almost 40 years of sector experience and lived experience as a carer.

Pictures from the launch event

Photographs by Photographer London.

Recording of the launch event