Roxi's Journey

Roxi was around 9 years old when we started to notice she was different. She loved structure but was also incredibly impulsive at the same time. She excelled at school but had crippling anxiety around attending. She had an incredibly bland diet and was very particular with what she would eat, to the point she could even tell if she'd been served a different brand of waffle! She began running away from home and self harming around 10. That's when we turned to our local GP for help. Dismissed as "just not a very nice person" and "naughty" by one mental health specialist GP at our local surgery, after multiple visits she was eventually referred to TAMHS by her primary school. She received a few counselling sessions and with a hand full of pamphlets we were sent on our way to figure it out ourselves.

In the summer before her final year of primary school and at our wits end we paid for a private child psychologist to do some work with Roxi who suggested she was displaying all the signs of ASC. We had to end those sessions though as we couldn't afford to keep them going.

The self harming got worse and Roxi's mood drastically deteriorated. We couldn't go anywhere or do anything and she just told us that she didn't want to live, the most heartbreaking thing for a parent to hear. We begged CAHMS to take her on which kept getting rejected as she didn't meet the criteria. Eventually, we found the name of a senior person within our local CAHMS team and spoke to them directly. They were fantastic and she was taken on.

The transition from primary school to secondary school is when things really escalated.

She couldn't physically attend class. She was branded a "trouble maker" and "naughty", being excluded for being unable to go into a class room. She ran away from school several times and eventually was transferred by her mainstream school to an alternative provision setting which the school funded. The support within this school was no better though and she continued to not be understood. She struggled to access education and to function in normal social settings. Two attempts at obtaining an EHCP were knocked back due to her "not meeting the criteria" meaning getting her the support she needed to access education just wasn't available to her.

CAHMS were brilliant. She had 1:1 counselling & CBT therapy during which it was suggested that all the signs were pointing to her being neurodivergent - specifically ASC (Autistic Spectrum Condition) and she was referred for an assessment. Eventually, after 18 months, she had her assessment and the ASC diagnosis. This helped us secure her EHCP on the third try and we were able to get her into an appropriate school setting with a plan on how she would be supported. She was also prescribed Fluoxetine to help manage her moods, which helped - but she continued to be erratic in her behaviour and make bad choices.

These bad choices eventually resulted in her being on social services radar, who were fantastic. Her social worker completely got her and very quickly suggested that there was something else going on, not just ASC. She thought Roxi was displaying all the signs of ADHD (attention-deficit / hyperactivity disorder). We mentioned this to Roxi's CAHMS phycologist who agreed and referred her for an ADHD assessment - the only problem being the wait was going to be over 12 months. With Roxi coming into the last year of secondary school and her GCSE exams fast approaching it would be too late to make a difference. We took the decision to get a private assessment and within 6 weeks she had her diagnosis - ADHD.

It all started to make sense. Having ASC and ADHD meant her brain was in a constant battle with completely opposite drivers! She was prescribed medication for her ADHD and the difference overnight was unbelievable. A drive and focus appeared in her we had never seen. She was going to school consistently, staying in class, getting her work done, revising at home - she was a completely new person!

Roxi is at college now. Even though she missed almost the entirety of her secondary school education, she passed her GCSE's. We can only imagine what she would have been able to achieve had she had access to an assessment earlier in life and the support that comes with it.

So much time was spent fighting just for basic support for Roxi. It was such a difficult period for us as a family, and Roxi went through so much unnecessary trauma, much of this could have been avoided with an earlier diagnosis and appropriate support. We thought things would never get better, but they did. It just took too long.

The Roxi Foundation was formed in 2024 to help as many young people and their families as possible in the Swindon area bypass lengthly NHS waiting lists by funding private assessments. We hope in turn this will relieve pressure from under-funded local CAHMS & TAMHS services and the NHS, giving young people the best possible outcomes in life.