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.
Slides of all of the presentations are available here.
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.
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.
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?
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.
At last! … we, as carers, are ‘seen’ and validated. Time for a re-balance in how services are operating. Thank you 🙏.
3 solutions:
1. Validation.
Listening and acknowledging what we have been through. Genuine concern. I see you, i hear you, i’ve been there, i get it! Only by sharing our stories & gaining momentum can we expose what is going on and advocate for big change. There are some good souls in ‘the system’ who also see this .. get them on board to speak out.
2. Collaboration.
We, as families & professionals need more links/platforms to share & connect our experiences (just like this event). Our isolation fuels the ‘getting away’ with bad treatment.
3. Kindness.
Being kind to yourself has been the biggest blessing for me! It took years to learn this, but now i do it every day. They are the smallest things sometimes, but i lost value for myself and confidence in my own abilities for many years. I have learned to ‘fill my own cup’ and gain better balance overall. You matter 🧡.
4. Look Elsewhere.
Look to other countries for inspiration on what they are getting right that we are not (think Scandi countries in particular good eg of better system).
We all know £££ is at the heart of this, or at least that is what we are led to believe. A sea change in attitude and beliefs from society will put that right .. money can be found where value is perceived. 🙂
I’m suffering Systems Generated Trauma, simply because everyone tells me someone can help and they never do. I’ve been pulled from pillar to post, hours of time wasted having had to re-count all the difficulties my children suffer over and over again in order to get medical, mental health and education support my child is legally entitled to. Yet I’m ignored because I am coping too well. But I’m no longer coping, and this is what the system is doing to mothers and families being broken apart. Knowing we need to be ruined perhaps is the most difficult fact I must deal with. Knowing that if we should too loudly we could face allegations on Fii for caring too much to help our children.
My son is so traumatised by services he will not engage anymore. They refuse to help, lie to him, false report and say I ask for too much help when we actually get none. I put in a complaint to social services about this and they refused to take on the complaint so I had to do it online to force it through. They lied, denied and gaslit on all their replies so I escallated it but the manager was even worse. I was too ill to continue after several months. Later they decided to turn up with the police claiming he was ‘hidden from society’ and demanding to speak to him because he refused to engage anymore. He is selectively mute so cant speak under duress but they have never accepted they need to take into his diagnosis’ of Autism, Selective mutism and ME/CFS.
All departments have referred him to them over 14 times…he has been assessed to death offered lots of things but then they just close the case. As a result he is housebound and traumatised and no one will help him.
SEND Have lied on their report claiming they have done things they havent and other things, I complained and offered an amended realistic version but they maintained theirs that said they had dealt with and solved ALL his issues and had an active ‘team around the family’. This is a blatant lie. He had no support.
EHCP are another nightmare. 3 years to get his needs agreed. Being forced to attend 3 settings before they agreed he couldnt and then EOTAS but he has been waiting another year for a tutor. They tried to claim one wasnt agreed to get out of supplying one in March which was swiftly knocked out of them and now we are waiting to see if they supply one in September or not. Meanwhile he feels abandoned.
I am an unsupported single mum with ME/CFS, fibromyalgia, CPTSD and a very large hernia. Social condemn my struggles as being a lazy parent and never help me either.
We have been assessed excessively promised many things but they dont materialise and then they retaliate to complaints by lying, denying, gaslighting and bullying.
I am so sorry. This is horrific. I can really understand what you have written. Every word. You are not alone. That’s all I can give you .
I’m fighting for change.
I’m fighting for my daughter.
We are not quite the same however the system had completely failed us
The service providers do not want to hear us.
Please take care and be strong. You are amazing..🙏
What a much needed conference. Thank you for highlighting this. Luke and Vivien, you may remember me when I set up and ran the NAS Advocacy for Education Service. Last year I found myself as a parent facing the system when my daughter refused school and needed EHC assessment for suspected autism (still waiting for a diagnosis almost two years later). I am a parent with expertise and knowledge and while I did secure EOTAS it was not without a significant battle and LGSCO complaint. It was about 20 years ago when I ran the advocacy service and helpline and worked with Steve Broach on policy and yet here we are still struggling and suffering the consequences of a broken system. I see so much trauma on parent support groups it is heart breaking.
This is great it’s being discussed and also that health block referrals and use the FII cards !
The system is broken and many familes are having S17/47 assessments used wrongly in child protection cases for children that have SEND.
Absolutely agree! We were placed on CP plan for professional negligence and 18 months later public funds and resources are still being wasted as they know our child is safe, cared for and appropriately advocated and safeguarded, more than can be said for the services over the last 7 years! We have fought tirelessly with health, education, mental health being the absolute WORST of them all! Delaying diagnosis, willfully withholding medication and causing further harm and suffering to our child. We have complained to the highest level and through doing so, the worst of the services tried to spotlight us as parents to take the light off their own failings. We have been systematically abused repeatedly for years and it’s been harrowing. We have mountains of evidence against them all and will not stop fighting for change
This was a great conference evidencing how the system grossly fails the most vulnerable like ourselves and thousands and thousands of others.
My family and I have been traumatised and hounded for speaking up, by the corrupt and unfit social care system for 35 years! Grossly blamed unfairly in an attempt to quieten me for highlighting such offensive failures and me being deliberately ‘set up’ to lose my senior managerial employment as I was too much of a risk to them as I knew too much.
The level of the vendettas we have faced are too obscene and triggering to write on here. They include attempted illegal kidnap of child, deliberate lies, misuse of court proceedings to control, libel to court, parental blame, misuse of safeguarding, deliberate recordings to set out a supposed pattern to ‘evidence’ their lies, misuse of mental capacity act, human rights act, care act, children act etc, deliberate risks of placements to cause harm. Our entire family have been destroyed time and time again by such abhorrent practice, some due to ignorance, but most deliberate and cruel to cover up their offensive systems that traumatise.
Our child and family are suffering 24hr a day trauma because of the abuse of the so called health system in Scotland 2022 …the system refusing to understand that is what is causing the trauma ….in simple terms when you have been slapped in the face and your first reaction is why? When the system says you weren’t it leaves you a life time of questions ….it plays in a loop in your head along with the reason of the trauma inthe first place ….