I have two children, and my eldest child Lois is 10.  Lois has a range of complex needs including autism, learning disability, extremely challenging behaviour and a number of health conditions.  Lois is my joy.

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.

I should say that even before Lois was born, I have worked within the SEND sector. I am a Senior Lecturer at Liverpool John Moores University, and I am Programme Leader for the BA (Hons) Education and Special Educational Needs degree. My work and research have always been within the area of SEND. Ironically, my PhD many years ago focused on parental blame and parent-practitioner relationships. I naively believed that I had the knowledge and experience to support me in supporting Lois.

And yet, why is the process of accessing support for Lois so traumatic and challenging? The whole process, regardless of what service we are trying to access for Lois, is one of surveillance and scrutiny, not recognition or empathy. Parents are viewed as problems to silence, not partners.

There are so many negative experiences over the past ten years that have left me in a state of despair with our public services. A few examples;

• The continued ‘fight’ with our local continence team to access appropriate continence products for Lois; reports of ‘blanket’ policies regarding what products can be supplied, with these policies seemingly not existing after submitting complaints. If you question things as a parent, you are viewed as the problem.
• Undergoing weeks of scrutiny within our family home to try and access direct payments/respite support for Lois, which had to go to panel 3 times for an initial measly 4 hours per week
• Passed from pillar to post, between CAMHS and Learning Disability CAMHS for two years to access mental health support for Lois, which left us on the brink of collapse as a family. After multiple complaints we got to psychiatrist and psychologist level for Lois. One of the first things they said to me was ‘how have you managed this long without psychiatric input?”
• The battle with our local authority to move my daughter from a LA special school to an independent specialist provision last year. Multiple complaints and parent blame.

I never expected to be the parent of a disabled child.  However, this is our situation that we have learnt to embrace, and Lois (and her brother Rory) are my pride and joy. But what I never signed up for is the relentless battle to access tiny scraps of ’support’; support which could be pulled from you at any moment. Support that takes hours of emails, telephone calls and complaints alongside my full-time job. The saddest thing is that I almost feel numb to it all, resigned to the fact that public services do not want to help disabled children or their families.  That is devastating when, in my professional role, I am preparing individuals to work within the SEND sector. That being said, there are some excellent professionals. There are several professionals who have been exceptional with Lois, and our family (sadly I can count them on one hand though).

One key change needed is more transparency and co-production around local ‘policies’ regarding referrals to services, assessments, access to support and so on. These policies, that if questioned, never seem to materialise, or are so deeply hidden in LA and ICB websites that they are impossible to find.

I would love to be involved in getting the message out there regarding Systems Generated Trauma. As I said above, parenting Lois is the easy part. But the trauma caused by public services will stay with me for a very long time, and it is something that I cannot escape.