Son with Brain Tumour refused support
I contacted the Emotional Wellbeing Hub to access support for my then 14 year old son who was expressing suicidal ideation caused by daily bullying at school, difficulty regulating emotions and anxiety around seizures which were caused by a benign brain tumour. He had been assessed by a Psychiatrist at GOSH who said his anxiety and depression were very high and that he needed support from local CAMHs and an assessment for Autism and ADHD. IT was some time before we had any response and my son had to undergo a further lengthy assessment which started with the question if he had thought about harming himself. While this is a topic that needs to be explored, it needs to be done sensitively and perhaps not right at the start. As a result of how and when he was asked this question, he was reluctant to open up, was not honest about his feelings which he felt ashamed about (not because of me) and was upset afterwards. I was then contacted by someone else from one of Child and Family Mental Health Team, saying my son had been referred to them for an assessment and he had to go through the process again. The same thing happened and I could see my son getting upset about the assessment and the first question being about suicide/ self harm. Then a couple of weeks later I received a letter saying that my sons case had been closed because 'they didn't think he had a mental illness' and that his depression and anxiety were a normal reaction to the situation he was in. I was given signposting to online mental health information and parenting programmes. I was left very confused about what the criteria was for eligibility of mental health support/ therapy and in fact what 'a mental illness was' when someone has scored very highly in anxiety and depression questionnaires. Then a week or two after I received the letter, my sons mental health deteriorated significantly and he began hearing voices and having an altered perception of reality. I contacted them again for an urgent referral and he was assessed again and then referred to the Early Intervention Psychosis Unit who also assessed him. I did not hear back from them and tried to find out what was happening but no-one at the Emotional Wellbeing Hub had ever heard of them, or knew how I could contact them. I was given a list of possible locations and phone numbers and spent over an hour calling each one, only to be referred back to the Hub over and over. In the end I was told to take my son to A&E if his condition deteriorated or I was worried about him. I never heard back from the Early Intervention Team and I understand that they also closed his file after assessing him but I was never written to, to explain why. My son had surgery to remove his brain tumour and I was told to refer back to the Wellbeing Hub by GOSH as my son was experiencing severe depression and anxiety and still hearing voices. We were told that we would have to have an assessment - at which point my son said he couldn't go through it again, the constant assessments without help had become too upsetting. That was in early April. I received a letter in August, saying that following your 'recent assessment with the Emotional Wellbeing Hub we have been referred to the East Suffolk Children and Families Team for our mental health concerns. I have called the number in the letter twice now to speak to someone about the most recent letter and both times have left a message but have still not had a response. The whole experience has left me feeling like I need a mental health intervention myself.