"Deeply disappointing experience of CAMHS"

I am writing to express my deeply disappointing experience of CAMHS services. I have been attending appointments there for the last 18 months or so with my ten year old son. I would like it noted that if it were not for his doctor there at present I'm not sure if I would be fit enough to write this letter.

The service we have received prior to this intervention has been appalling. Being a professional myself within the NHS with a background of working with children I am so disappointed. Recognising early signs and a clear difference in my son to his siblings and having great difficulty with his behaviour I requested that my GP made a referral as we wished to know if this was behaviour or something underlying.

Our first meeting was with the CAMHS nurse who took some history developmental. We were offered a 14 week parenting course which we felt we must attend as has heard you need to jump through hoops to get help. Following the 14 weeks and utilising the measures we found very little improvement and informed CAMHS of this.

Following info from school more appointment discussing development behaviour I attended an appointment to discuss the findings. I was told my son has ASD this was discussed at MDT meeting and this was the results. I was told I would receive a report and information to signpost support. This information never came and I eventually received my sons report full of spelling mistakes and no updated information about 8 months later after constantly requesting it.

During this period my son became worse very unmanageable and tried to jump out his window and attack myself and his siblings with a knife. I had discussed previous to this with his CAMHS nurse that I would like to see the psychiatrist as I feel there was more to my son. The nurse said it would be 6 to 8 weeks to see the doctor. My son became progressively worse and wanted to die and was completely unmanageable. I contacted CAMHS on a weekly sometimes daily basis to highlight these issues. Most days I would get no call back even the receptionist said has no one called you back yet?

One day during this period we went to GP who reverted us back to CAMHS. We knew we needed a doctor but no one would listen. Being very upset we voiced that we felt no further forward had no support and needed to see a doctor. We were told so! Is that the way we acknowledge empathy to families in crisis? The same day I was called by a psychologist who I had never met who had read the notes on request and asked if there was any trigger. I had a son at home who wanted to die, no trigger. I feel this is completely unacceptable and the lack of support and intervention has had a profound effect on all of us we all now have mental health issues.

Working in acute care front line had an adult be behaving that way wanting to die having a kid trying to jump out a window they would be acutely assessed. Why was it not taken seriously for my son? Is he discriminated against as he has ASD and there must be a trigger? Do high functioning autistic people not commit suicide or have mood disorders?

Telling parents to remove the knives lock the windows risk assess for 6 weeks is appalling. As is telling parents if he did jump out a window the waiting time to see the psychiatrist would be the same. Finally getting to the psychiatrist my son was appropriately diagnosed with ADHD as well as ASD with traits of PDA, getting medication which he badly needed for that period has stopped him saying he wants to die thank god.

Additionally he has huge sensory issues and is currently getting seen by speech therapy on my request and awaits occupational health. I have written to the minister for mental health and await a response. Whilst I am grateful my son does now have appropriate diagnosis the system is poor.

Parents are the prime educators and know their children best. Doctors should be at the forefront with these vulnerable groups. As previously stated an adult in acute crisis would be treated better. My family continue to suffer his twin sister has been badly affected, I had months off of work due to stress and his older brother has issues going to attend counselling. In other areas these kids are seen by paediatricians as part of the assessment and input from the MDT should be timely. Why are parents not at this meeting? Support should be given to the family as a whole.

I now have friends who have attended woodside - no parenting course for them and they were referred to autistic assessment centre. I was never offered this, why? Is it the same assessment process for all or is it based on the nurse's own thoughts? 

I would like a proper professional report on my son with factual and up to date information which was given. Not a bit of paper to get rid of us. I would like answers and I would like help for my family as a whole.