Suffolk Children and Young People's Emotional Wellbeing Hub

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.

They made me do the self referral, long waiting list, no replies back, called and they said they would call the next day and never did and tried calling two other times, they answer and then hang up.

You submit the referral and include as much information as possible and then get asked the same questions again once you get to speak to someone, whereas it would be nice to expand upon what you've already said.

They never seem to been able to help my daughter with suspected learning disability or asburgers she failed her exams and her future look poor and really she had no help at all

There was a delay in referral which we found out was in an outbox this has happened several times and I have had to follow up where the referral was. A telephone assessment is not the right thing to talk to a stranger about feelings. Can have a long wait to have a face to face assessment. Only to be advised that could go to 4yp counselling which we could have self referred to after months of waiting for assessment and waiting for support. Have had it happen that there’s a face to face assessment and told it would be referred to idt and they rejected it. The service is not for fit purposes and they let down the cyp.so many dangerous examples which I have raised frequently with senior management such as having over a month waiting to hear following a detailed urgent referral- having to send people to A+E for assessment and that’s not a good environment for cyp.

Wellbeing hub could not offer my 8 year old any support, seen once and discharged, pointless this is our second referral wont bother again, like all other services in suffolk not fit for purpose. I am only leaving one star because i have to otherwise it would be none.

Child has suicidal thoughts and has self-harmed. Mum went to Emotional Wellbeing Hub. Given appointment to see Psychologist. Had assessment. Mum told them that the child has dreams of hanging herself. Mum was told to come back to school for them to do CAF. The child is in year 6 and will move up to high school in September. Concerned that with change of school, things may get missed or lost.

Son was on list for ADHD referral but then received letter explaining too many people on list so all being removed until a list of reports/events had been done and then a further ten weeks to wait to see if improvement had been made. The Hub took no notice of individual circumstances i.e. the fact that I had my doctor onside and referring my son as could see a problem plus school was onside but still they were insisting on list to be completed. Including items clearly not needed i.e. CAF, parent courses (my eldest is 23 and had ADHD so I know from experience what I am doing and what I am looking for). Not understanding at all. This all causes a long wait for diagnosis (probably two years). The system is failing our children and us as parents.

Absolutely shocking lack of empathy for teenagers who have battled with mental heath from a young age. I cannot get any help for my 15 year old son. He sufferes from severe depression and anxiety and won't leave the house. I was told to contact the emotional wellbeing hub but have received no help, or any form of follow up or appointment. I am currently teaching myself about CBT so I can deliver it to him myself!!!

I contacted them 3 months ago but have had no help and am still suffering