National Assembly for Wales
Children, Young People and Education Committee

CAM 64

Inquiry into Child and Adolescent Mental Health Services (CAMHS)
Evidence from : Service User

I am a Parent of someone who is currently on the routine waiting list for child and adolescent mental health services in Wales (Torfaen)

My daughter (aged 10) has been on the waiting list for CAMHS for a year now.  She has no diagnosis but we feel as parents that she is on the spectrum but due to the fact we have worked as a family incredibly hard she copes well as can be in day to day situations and has learnt coping strategies to mask her traits to the outsider.  I myself worked in NHS for 13 years working with ASD children so I am not just a typical neurotic parent as we seem to be classed as when we feel there is something not quite right with our children.

She has a diagnosis of Hypermobility Syndrome, Hypotonia, Dyslexia and tendancies of Dyspraxia.

She has over the last year been suffering with anxiety her sleep patterns are eratic this has been from the age of 4 ( sleeping from 1-130am) and now she is 10 we have got this down to (11-11.30pm) as she tells us she cannot switch her brain off.  I have been made to feel like a bad parent regarding this.

My daughter has no problems in the school setting or none that they can see as she bottles it all up and explodes at home, school did a behaviour diary over 3 weeks and this showed when she flicked and flapped in certain situations even though they still class her as a star pupil and I am in a way glad that she does not have meltdowns at school.

She has been seen at Cahms previously within the last 3 years and they have done a 3di test, Ados and school observation, what came from this was that although she ticked a few boxes there was not sufficient evidence that she was on the spectrum although we were informed this may become apparent when her hormones kick in, as parents we feel this may be to late and the damage is already done we are not after a label but an understanding for us and my daughter to why she is the way she is.

My daughter feels she is different to other children and as a family we can see the gap is widening as she gets older.

We as parents feel early intervention is paramount, to wait for yet another year without any support or help/guidance only from our GP is not right at all, our GP referred us in to the Primary mental Health Team but we were told they could not get involved as we are on the waiting list for Cahms this was due to my daughter suffering from anxiety so we were knocked back from that department and the wait continues to be seen with Cahms.

We have looked in to a private assessment but this is very costly.

I understand waiting lists are there for a reason and urgent case are seen first but being on the waiting list for a year now and having no support from any one only our GP is appalling they are not letting us down they are letting my daughter down.

Her confidence has been knocked so many times she wants to understand why she says/does things that other children her age do not do and as parents we reassure her all is ok and there is nothing wrong but we are also lost in this as we do not know what is going on.

We as a family feel let down greatly by this service and I know I am not the only parent going through this but some are not as strong enough to fight for their children, it should not be a fight it should not be this hard to get help/support from the correct services.

Things need to change for our children and to enable them to have a better future and not end up with anxiety issues, suicidal thoughts, depression and much more.

I am one of the lucky ones to have a strong family and an excellent GP