Below is parts of a letter I wrote to a local councillor in the Summer of last year regarding the complete lack of mental health services for children in many parts of the UK:
“My eldest daughter, Emma, is eight-years-old and diagnosed with autism (Asperger’s). She also struggles with anxiety, insomnia and many intense phobias. We first made contact with our GP about our concerns regarding Emma’s behaviour and emotional health in 2013 (when she was four). It took until September 2016 (when Emma was seven-years-old) to receive her diagnosis. During those three years I battled constantly to get some sort of support for Emma to help her deal with her powerful emotions which often led to extreme outbursts where she would cry and self-harm for hours, screaming at me to kill her and eventually falling into a catatonic state where she would lie prone on the floor not talking or moving. I approached CAMHS numerous times but was always knocked back. First I was told they wouldn’t help because they believed she has a neuro-developmental delay and they don’t deal with children with them, this was before her diagnosis and the paediatric psychologist told us that without a diagnosis they could not get involved either. We were left feeling as though we were trapped in Limbo screaming for help that never came. When I contested CAMHS’s decision to not provide support for my daughter I was told (amongst other things) that they “didn’t have a magic wand” and that “I seemed like a competent mother and [they were] sure I could cope” (this was during a phone call where I explained how my five-year-old was asking me to tie rope around her neck to kill her).
When we received Emma’s diagnosis, ten months ago, we rejoiced. Finally, here was the diagnosis we had been waiting for, now Emma would get the help she so desperately needed! Not so. Around Christmas, we believed Emma was coping well and the paediatric psychologist discharged her from his clinic (having provided a diagnosis but no psychological help or support at all) promising me that if we ever felt we needed support again I only needed to call or get a referral from the GP and Emma would be seen again. In January I noticed self-harm marks at the tops of Emma’s arms, on her tummy and on her thighs. When I questioned her she admitted that she’d been hiding her anxiety from me and self-harming in private. Worried, I took her to the GP and asked for a referral back to the psychologist’s clinic. I also called CAMHS once again and asked if they’d take her on, the answer was no, she has autism, they can’t help. We waited months and finally, in April, a letter arrived from the paediatric psychologist. I recognised the letter the moment it landed on the doormat from the stamp on the envelope. My heart skipped a beat as I snatched it up and opened it, excited to see when my little girl would finally be offered the help we’d been begging for for four years. Reading the letter crushed me: the psychologist would not help Emma; as she was self-harming he felt CAMHS would be more appropriate. We were back in Limbo. Refusing to give up on my little girl I called the psychologist’s secretary myself and begged her to at least take my number and pass my details onto the doctor so that I could explain our situation, she refused. Undeterred, I called CAMHS again, it took them a while to get back to me but finally, in May, they called and said they would see her! In June I took her to her first appointment at CAMHS. The meeting was a positive one. The doctor there seemed annoyed by how we’d been treated and promised that CAMHS would provide occupational therapy (OT) for Emma and that he would also contact the paediatric psychologist for me as he felt that she needed an autism specialist working alongside CAMHS if the OT was to work. Fast forward to July and, following a meeting at school which the CAMHS doctor attended (and hinted heavily that he would be withdrawing the help from CAMHS), a letter arrives through my door discharging Emma from CAMHS and snatching away the tiny glimmer of hope they had given us. The promised OT never materialised and I never heard anything from the paediatric psychologist regarding CAMHS contacting him. They told me to try a charity for support and to try the paediatric psychologist again myself. The charity informed me that they no longer operate in my area so they could not be of assistance. In tears I called the paediatric psychologist’s secretary again, she was icy. She told me that he would not help in cases where there was self-harm, telling me to try CAMHS. I explained how CAMHS had snubbed us and pleaded with her to just take my phone number, telling her how the psychologist had promised that by discharging us, he was not locking the door on us but, as she had done in April, she refused. I called CAMHS once again and begged them to take Emma back on. Over the next few days, I called three more times and eventually, they agreed to see me without her. I have an appointment to see the same doctor as before again on August 1st. I can’t imagine it will go well. (My predictions were correct, the meeting in August did not go well. I went in ready for a fight and I fought and argued as much as I could but the CAMHS doctor was no use what-so-ever, simply passing the buck onto the paediatric psychologist who, in turn, -I had them call each other to discuss who should take Emma’s case while I waited in the office- passed the buck back to CAMHS. )
I am tired of fighting these services. My little girl is crying out for help and I’m at her side, desperately trying to get somebody to notice her before it’s too late. My daughter is getting older and stronger. She is becoming more inventive with her self-harm and it’s terrifying. When she was little she only punched, scratched and bit herself but now she runs into roads, ties ligatures around her neck, tries to hang herself and tries to cut herself with scissors. Life for an eight-year-old shouldn’t be like this. She should believe that she in the centre of the universe and should care only about toys, books and television. Instead, she is battling demons in her head and, what’s worse, she is battling them alone because none of the services who should care about her do.
I can’t watch her slip through the cracks. For all her problems Emma is a vivacious, intelligent and hilarious child. I know that if she is allowed to grow up she will change the world for the better.”
I wrote that over a year ago and still, Emma has had absolutely no help from any mental health services. Luckily for us, I have been able to pull her out of school to home-educate her and am using my own personal experience and knowledge of psychology and mental health issues to employ a sort of CBT to help change her thinking and improve her emotional health. For the most part, it’s working well and reading that back I’m thrilled to see how far Emma has come since we pulled her out of school, started using the techniques described in my previous post and worked to improve our own understanding of her behaviours. But that doesn’t make it right, we never should have had to do that and for many families home-education and employing your own brand of CBT is simply not an option so they are left with a child screaming for help and never getting anywhere.