Building practical solutions for traumatised families

11 July 2024

Systems Generated Traumas – a conference held at the University of Leeds School of Law on 9th July 2024.

Building practical solutions for traumatised families

11 July 2024

Systems Generated Traumas – a conference held at the University of Leeds School of Law on 9th July 2024.

cerebra annual conference

On 9th July 2024 we jointly held a conference at the University of Leeds, School of Law to explore practical solutions to addressing what is referred to as Systems Generated Trauma, and address awareness raising actions to generate further support and collaboration.

The conference brought together diverse perspectives to generate awareness about families being traumatised as the result of the inexistent or deficient responses provided to them by organisations, public bodies and/or services.

‘Trauma related practice’ is a phrase increasingly used by public bodies to convey awareness that many of those they interact with have experienced life changing situations. These traumas recognised by public services include a wide range of instances including, adverse childhood experiences, domestic violence and mental health difficulties.

However, what is not generally acknowledged is that many users of public services identify their most traumatising experiences as the way they were treated by the public bodies that they approached for support.

Experts in the field say ‘Systems Generated Traumas’ of this kind are a daily experience for many people in contact with the social welfare system, including carers, disabled adults and disabled young people.

There is a myriad of intersecting examples, but for parents of disabled children these can include:

  • being prosecuted when their disabled child is ‘school refusing’.
  • being refused support by children’s services when in desperate need, but then having their home inspected and their children interviewed for child protection purposes.
  • being accused of fabricating or inducing their child’s illness (FII) because they have requested a second opinion from a health professional.
  • being unable ‘to access justice’ to gain redress for the damage done by behavior of this kind.

A parent’s view:

Donna K, a parent and grandparent who has suffered trauma generated by the system, said:

“As a parent and grandparent, having over 30 years’ experience of both fighting and navigating the system for support for Education, Health and Social Care services, for my disabled family members, and supporting other parent/carers of disabled young people, I can honestly say that it has been a harrowing experience at times, leaving myself and other parent/carers feeling absolute despair and traumatised by the battle that they have endured. and the constant firefighting to prove that the support is necessary and that you are not at fault.

This leads to distrust of all agencies and professionals who should be supportive, along with every aspect of your health and being, emotionally and physically shattered. You have no choice but to continue to ‘work’ with these people who you feel have totally disrespected and emotionally abused you.

I have to say that over the many years of experience this has only got worse, which is fundamentally wrong.”

Professor Luke Clements, Cerebra Professor at the Leeds’ School of Law said:

“We hope that this event and our research concerning ‘Systems Generated Trauma’ will bring about meaningful change in the way public services operate. Social welfare agencies must understand the harm that their systems and their practices are causing to those that approach them for support. This understanding should then result in fundamental revisions to their policies and their practices – so that those in need of assistance are not traumatised but supported.”

Beverley Hitchcock, Head of Research and Information at Cerebra, said:

“We are a national charity dedicated to helping children with brain conditions and their families. Our Legal Entitlements and Problem Solving Project at the University of Leeds School of Law is an innovative approach that helps families of children with brain conditions cope with the legal barriers they face.

We listen to families and provide them with the knowledge they need to access health, social care and other support services. Through the project we can identify the common legal problems that prevent families getting access to services and develop innovative ways of solving those problems. By sharing solutions as widely as possible through conferences such as these, we can ensure that many families can benefit.”

Speakers:

Ana Laura Aiello: postdoctoral researcher on the Cerebra LEaP project at Leeds. Ana studied law and human rights in Argentina, Spain and in the UK (obtaining her PhD at Leeds University). She has worked for a number of international NGOs (including Amnesty International, Disability Rights International and CHANGE) and at universities in Argentina, Spain and the UK.

Andy Bilson: Emeritus Professor at the University of Central Lancashire and he researches child protection and parental participation in children’s services. As a social worker Andy held many posts including Assistant Director in Fife Social Work Department and Assistant Director of Action for Children in Wales. From 1997 to 2001 he was Director of the Council of Europe’s and UNICEF’s Observatory on European children’s rights. He is on the board of the Parents, Families and Allies Network and involved in promoting parent advocacy nationally and internationally.

Beverley Hitchcock: Head of Research and Information at Cerebra.

Derek Tilley: Senior Development Officer within Cerebra’s Legal Rights team. He has had a long interest in supporting parents with disabled children access their legal entitlements.

Elly Chapple: Founder of #FlipTheNarrative and a TEDx Speaker thanks to her eldest daughter, her greatest teacher. She focuses her efforts on what it is to be human, by retaining curiosity and acceptance of innate human diversity, to ensure everyone has a seat at the table.

Luke Clements: Cerebra Professor of Law & Social Justice at the School of Law, the University of Leeds.

Mary Busk has spent her working life in the public and voluntary sectors including 18 years at the Department of Trade and Industry. She is a founder member of the NNPCF and currently works for NHS England in the Learning Disability and Autism Programme. She spoke in a personal capacity today as a family carer and mum of 3, one of whom is disabled.

Peter Baker: Senior Lecturer in Intellectual Disability at the Tizard Centre, University of Kent. He worked as a Consultant Clinical Psychologist for the NHS in Sussex for over 20 years where he had leadership responsibilities for learning disability psychology services in East Sussex & Brighton & Hove. Peter is widely published in the area of challenging behaviour and intellectual disability. He is currently involved in funded research concerning staff support systems and family trauma.

Vivien Cooper OBE: parent of a young man with severe learning disabilities and the Founder and CEO of the Challenging Behaviour Foundation.

The conference was organised by the University of Leeds, Cerebra, the Tizard Centre at the University of Kent, and the Challenging Behaviour Foundation (CBF). It brought together families, academics and professionals in the field of children’s social care, health and education.

The conference was made possible through generous funding from Cerebra, Leeds University and Fletchers – specialist solicitors supporting families of children who have suffered brain injuries and other brain conditions.

3 thoughts on “Building practical solutions for traumatised families”

  1. Alison Pettitt

    I am interested in any follow up from the trauma conference. I have never seen it acknowledged or named before. This describes myself and my wife. We lived through hell but never knew it had a name or was a thing. Thank you for saying it.

  2. OMG!! Thank goodness fir this conference 🥰.
    Systems Generated Trauma is RIFE in all areas of social care!
    I am so happy to hear that this practice is actually being addressed.
    At present these services are answering to nobody for the huge levels of trauma they have/do cause to those that need their support the most!
    I am one of the thousands (possibly millions) to have suffered and despite following the official complaints process, am still being forced to fight for my childs education and health needs.
    How will we know what will change this practice?

  3. As a lone parent with my own disability. I am pleased to see this issue of systems generated parent carer trauma is being taken seriously.
    Ironically our journey began when we tried to get support for a trauma for my son. This turned into 14 years of sheer hell for him and myself as the finger of blame was and continues to be pointed at me. As a result of this my son now has worsening health and cognitive impairments and we have both become very isolated as there is nowhere for disabled parents to turn to for help.

    I really hope the outcome of this conference really does bring about the positive change so many of us desperately long for.

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