My 15 year daughter had her place removed from her specialist independent school Hartmore Genesis via email and without notice or fair process. This was following a disagreement on how they were handling a school bullying situation involving my daughter.

On finding out the news she had lost her place at school, my daughter jumped from her bedroom window and suffered significant and life changing injuries. She broke both her ankles and now has altered mobility and pain. After medical input at Bristol Children’s Hospital, she was transferred to Highfield unit in Oxford where she has remained for almost 15 months.

She is now 17. She is autistic and they do not meet her needs. Current care has been harmful and she is deteriorating rapidly. The plan is to now send her to a low secure unit which will be a 6-9 month stay minimum. I was not consulted in the referral and do not feel a further hospital admission is in her best interests. Sadly, she has no other option due to how much she has deteriorated due to a prolonged hospital admission at the Highfield.

As a family we have suffered significant trauma from dealings with the school and how they terminated her place. And then significant trauma from the Highfield. She is currently in long term seclusion which is well documented to be harmful for autistic young people. She is sedated daily via injection. The system is archaic and abusive. Recent reports show how harmful current practices are in mental health units for autistic people, yet they continue to happen.

The trauma has been life changing for our family. I feel completely out of control and not heard. I have no option but to stand by as professionals make the wrong decision time and time again and harm her, again and again. 

Schools who are businesses have the ability to get rid of students at the press of an email send button, knowing there are twenty more families lined up for that one spot. Services say they are neurodivergent friendly and aware but the truth couldn’t be further from this. They harm children like mine, and families like mine. They get to go home at 5pm but their decisions stay with our families for ever and we deal with the fallout.

The system needs to be regulated. Why are schools allowed to get rid of vulnerable students just like that? Why are hospitals allowed to seclude and restrain autistic young persons when it has proven to be harmful? Why is no- one regulating this? Who is controlling and monitoring them? I tried to report the school to LADO and the local authorities, but no-one would take it on. I complained to PALS but it’s the Highfield Unit themselves that sent the reply. It feels like you can’t take on the system and nothing changes.

What has the short and long term impact been on your family?

Short-term impact: Complete disruption to daily routine. Hospital visits, meetings, phone calls. It is chaotic and overwhelming. I feel like I’m in a fish bowl and everybody has a bit of my life, or an opinion. Financial impact of miles driven to the unit or hospital, cost of parking, meals on the go. Eating take-aways or freezer food due to the exhaustion of not being able to cook, or not being at home for mealtimes. Childcare, dog care costs. Like I have 100 balls in the air.

Long-term impact: It has affected all of our mental health significantly. Myself and my youngest daughter take anti-depressants and still struggle to hear sirens locally without a trigger. My eldest daughter has no trust in services that keep letting her down. I have had to stop working to care for both my daughters. I walked away from a 20 year career in the NHS that I worked hard for to be a full time carer. Our lives are unrecognisable.

What do you wish had been done differently to support you?

Communication. It always seems to come down to this. Why should one independent system be able to make such a significant decision – you have lost your school place. You can’t go home, you have to remain under section. Meetings and processes are in place but at the end of the day, individuals of a system are still able to make big life changing decisions for a family.

Why do you feel that a report on Systems Generated Trauma is so important?

Remember it is a family, it is a child. You may be a business, or a health care professional, but you are making decisions about a child, a family and this will stay with them forever. I wish those involved in systems decision making remembered that more.

If you could give one piece of advice to public service leaders, what would it be?

Firstly spread awareness. Does the wider community have knowledge of what is going on with system failure. The impact it has. Do those at the heart of the systems understand? Does that school headmaster that sent that email that day have any awareness of where we are now as a family. I wish he did, so he could see what kind of an impact that decision he made, has had.

And of course, to bring about change. CQC talks about how long-term seclusion shouldn’t be used with autistic young persons, so why do these LTS units still exist. Why are they still being used? Do the complaints pathways actually make a difference? Do LADO & PALS make a difference. Who is regulating them? How many families see a positive outcome from making a complaint about a system failure? Are they robust enough? Do we need another system that is non-bias, that supports the family, not the system.

Remember it is child, it is a family. Your decisions that you make 9-5 affect us 24/7 all day, everyday. Please don’t ever forget that.