I saw a request on Contact’s Facebook page for stories from families who have experienced Systems Generated Trauma and wanted to get in touch. I hadn’t heard of it before so I’m not sure if our story is what you are looking for. I’m getting emotional just writing this email. I find any mention of Social Care and Education services highly triggering and my heart starts pounding as soon as I receive any new contact from them.

I am also quite certain that the fight for provision, lack of support and dealing with, what I now know as, Emotional Based School Avoidance has been far more traumatic than dealing with all the serious medical issues my son has endured, in particular in the first two years of life. I find it appalling that this should be the case.

As background, my son, Haydn, became seriously ill with severe epilepsy caused by Cortical Dysplasia at 4 months old. By the time he was 8 months old he was having upwards of 80 seizures a day and he spent the majority of his time in Southampton General Hospital, including his first Christmas and New Year. We spent time on general wards, in High Dependency and in Paediatric Intensive Care. His first New Year’s Day saw him being moved to PICU so he could be induced into a coma to try and stop the seizures. At 14 months old he was taken into surgery to have nearly half his brain removed to save his life. He was left with Hemiplegia, learning Disabilities and he developed Hydrocephalus. He has had over 44 procedures requiring anaesthetic over his 19 years. Most of those as a baby and most of them brain surgery.

He nearly died on multiple occasions. We had to help hold him down so emergency IV lines could be inserted. We had to sit next to his bed in intensive care for days on end and we had to watch as a team of surgeons wheeled his bed into theatre for a surgery that had a 10% chance of death.

They were incredibly distressing times and, yet, I feel more traumatised by my experiences dealing with the LA, both Social Care and Education, than I ever did with my son’s health difficulties.

Why? Support. Care. Understanding. These were all present when dealing with the NHS. We had Consultant’s, Drs, and Nurses on our side. People fighting his corner every day to give him the chance at life. People standing by us shoulder to shoulder. Sometimes shedding a tear with us too. Our experience with the NHS was not traumatising because the entire system was there to support us. To save our son’s life. That was their job and, with few exceptions, that is what they lived for. When our son was wheeled into theatre at 14 months old, the Neurosurgeon assured us he would look after our son like he was his own. We believed him. When a nurse was on the phone chasing up a Dr, shouting at them, to come and see our son because his seizure had lasted for hours. We knew she cared. She had our back.

After his operation, when he was in PICU, I stood at the end of his bed. His tiny head covered in a huge bandage. Wires coming out from seemingly everywhere. The bed manager came and stood next to me. She put her arm around me and we just stood. Together. That one simple, but powerful act of kindness will stay with me forever. It sums up the care and support that we received at what should have been the darkest times in our life.

From the first days fighting for a specialist pre-school. To the catastrophic failures at a Special Needs Secondary school which traumatised my son, the support has been, not absent, there have been some wonderful individuals that have held us up. But, lacking.

Dealing with my son’s difficulties to attend school was lonely and isolating.

Apparently, it was we, as parents, that were doing something wrong.

In emails gained through a SAR request, I discovered a number of instances of parent blaming and sarcasm. It was clear that they felt Haydn’s anxiety was a result of my anxiety. Of course I was stressed and anxious. I spent most mornings battling to get my son dressed whilst he tried to tear his clothes off. I was assured it was the right thing to do. He was fine once he was there. Then there was the day he was so desperate to avoid school that he opened the car door at 30 or so miles an hour. Yes, I was anxious when I got to school. Who wouldn’t be?

I requested Educational Psychology involvement to try and understand what was going wrong. I was told to take my request to the LA. It was turned down. Apparently, the teacher told the LA it wasn’t needed. I didn’t appeal at that time because Haydn was due in hospital for major hip surgery and that was my priority.

I would get him into school for the afternoons, but he wouldn’t go into the classroom. So we would sit in reception for two hours at a time. No, the teacher wouldn’t provide work for him to do with me as that wouldn’t help the situation, they said. My requests to the LA for alternative provision because he was unable to access the school were turned down. The LA said the school should be dealing with it. No one wanted to take responsibility.

The stitches that the NHS so carefully placed to save my son’s life, have been callously and heartlessly ripped out one by one by a system that actually doesn’t care.

Things got so bad that I phoned Barnardo’s in tears desperate for help. Desperate to help my son. Unfortunately, that came with a waiting list. Finally, I got somebody in the school to listen. Finally, Haydn was referred to the school’s Educational Psychologist. Finally, the depths of the problem began to be uncovered. Apparently, despite an EHCP, the teacher hadn’t known my son had an acquired brain injury. Yes, he was overwhelmed in the classroom. Yes, there was genuine fear when entering the classroom. The true trauma my son had suffered wasn’t discovered until a few years later. I don’t need to go into the whole story. I’ve probably given more information than you need already.

In short, my dealings with both Education and Social Care have been, I believe, traumatic. The stitches that the NHS so carefully placed to save my son’s life, have been callously and heartlessly ripped out one by one by a system that actually doesn’t care. I will say I have met some wonderful individuals within that system, that have tried their best. But the system itself is so broken and damaged that their best either came too late or simply wasn’t enough.

I am now at the point where Haydn has been awarded an EOTIC package. But, after years (since 2019) without suitable educational provision, they consider 9 hours enough. It isn’t. They have turned down funding for his ballet/physio session. It’s only half an hour a week. Just £20. Essential for his well-being. But, no. They won’t fund it. We do have a wonderful provider for the 9 hours. But I should be appealing the decision. I should be requesting a full reassessment of needs to assess what should be in the EOTIC package. I’m not though. Not because I don’t care. Not because the LA has got it right. But because we need to rest. We need a break. If I could choose to never deal with the LA ever again, I would. My son will need care for the rest of his life though. So I have to stay in the system. But for now, I can’t face another fight. In part because I know the provision my son needs isn’t available and, in part, because I know it won’t get us anything other than stress. I’m dreading the next annual review though. I know there is a strong chance they will try to remove the EOTIC package. Perhaps, even remove the EHCP altogether. If that happens I will have to fight again. But, for now, we desperately need recovery time.

I’m sorry for such a long email. I wasn’t sure what you were looking for. I also don’t know if I want to put my name on anything yet. The chances of the LA deciding to make things harder for us are quite high. Plus, I wouldn’t want to cause any trouble for those people that have tried their best to help. But the damage being done to families can’t continue and I need some good to come out of everything we have been through. So, if our story is of any help, please let me know.

Thank you for taking the time to read. It is quite long but getting the words out and just sending them to somebody has been incredibly therapeutic.

The short and long term impact on the family

In the short term I have spent hours of time, that should have been spent looking after my family, writing complaints and chasing up professionals to try and get them to do their job. I had to give up work to ensure I could fit everything in and still be there to meet all of my son’s needs. Longer term we have lost out financially because of my loss of income. But, more importantly, the stress and anxiety caused by the systems failures can never be overestimated. Due to his learning disability our son cannot go out or be left alone at home at all and we now have very little help and support for him. The trauma he has suffered from the system means he struggles to bond easily with carers, and we have lost a number of them over the years because he simply gets too anxious to spend time with them. He even struggles to cope when he is looked after by extended family and can become increasingly anxious in the run up to my husband and I having a night out. This means we rarely go out these days without him and, when we do, we feel anxious about leaving him and rarely relax and enjoy ourselves. Looking into the future, I have no idea how long we can carry on living like this.

What could have been done differently? 

Joined up services would have been hugely beneficial with a keyworker who could be the liaison between all the different professionals and responsible for ensuring that everyone is working in the best interests of the child/young person and their family. Being listened to when I first raised concerns instead of being fobbed off as an over-anxious parent and, most importantly, accountability; someone being held responsible when things go wrong and proper consequences for failing to uphold the statutory legal framework.

Why the report on Systems Generated Trauma is so important

The SEND system is already broken, and it is so important that the government understands the devasting impact the current system is having on children and their families before it looks at making even more drastic cuts to EHCP’s, changing parent’s rights to home educate, removing the right to go to tribunal, making changes to PIP entitlement and potentially removing UC health top ups from some disabled young people. These changes, if implemented, have the potential to break families and will cost the country more in the long run. There are many good people working in the SEND system, but they can’t make things better in isolation. The system has to be improved from the ground up. There has to be increased funding in the short term to reduce long term higher spending; if families like mine break under the pressure, the cost to social care services will be astronomical. I have little faith in our government doing the right thing, so this report is essential to raise awareness of the severe damage that is already being done to families and hopefully put pressure on the government to do the right thing moving forward.

A piece of advice I would give public service leaders

Services need to work together to provide the support and provision that children and their families need and deserve. Currently Health, Social Care and Education work in isolation from each other and argue who should be funding what provision. This often leads to the child receiving no provision at all. To make matters worse, despite their being a statutory legal framework to follow, this means nothing when there is no adequate accountability. Even when parents ‘win’ at tribunal and are awarded compensation, this is usually much less than the Local Authority would have paid out if they had provided the legal provision at the right time. They have no reason to do the right thing, and this has to change. There has to be real and serious consequences for those Local Authorities who frequently and knowingly flout the law.