camhs being awkward with my request

My daughter is 16 and been under camhs on and off since she was about 8. She could write a book on CBT as this is all they've done. She was referred to the eating disorder clinic in August last year they diagnosed her with clinical depression, eating disorder (fear of food) anxiety , school phobia.  She also self harms. I've always told her councillors that I felt she was autistic but they said she wasn't.  Now her brother has a referral for autism, I sent a written  letter to them insisting on a referral for her using the nice guidelines.  They have responded by sending me 2 Australian scale questionnaire one for myself to complete and one for school.  She's not been attending school for 2 years (to which they know) she is in part time hospital school.  So who do I ask to fill out the other form? 

  • mum will sort it said:
    Has anyone here ever sued Camhs for damages.

    as my son had to wait until he was 22 before a diagnosis after being under Camhs since the age of 8 - Camhs failed to spot Autism.

    Having the same thing now with my daughter (although her's may not be autism) she wil have to wait until 18 before she can get a firm diagnosis. 

    Their lives including education have been completely destroyed due to the lack of help from Camhs and refusing to diagnose.

    Can i Sue and if so where to start?

    I've not posted on here for a very long time.  However, I feel strongly enough about CAMHS failing people, to offer you this information:

    Accident Advice Helpline - failure to diagnose autism http://www.accidentadvicehelpline.co.uk/blog/failure-diagnose-autism/

    The NHS Litigation Authority: http://www.nhsla.com/Claims/Pages/Home.aspx

  • Has anyone here ever sued Camhs for damages.

    as my son had to wait until he was 22 before a diagnosis after being under Camhs since the age of 8 - Camhs failed to spot Autism.

    Having the same thing now with my daughter (although her's may not be autism) she wil have to wait until 18 before she can get a firm diagnosis. 

    Their lives including education have been completely destroyed due to the lack of help from Camhs and refusing to diagnose.

    Can i Sue and if so where to start?

  • You try to get through to Camhs,they are very hard work,they are the ones that give up!!

  • Former Member
    Former Member

    Is it worth saying that camhs may be as difficult to deal with as an autistic child is hard to get through to? You don't give up on the autistic child because you think that there are benefits to be gained. Should you give up on camhs because you haven't worked out how to persuade them to co-operate with you?

  • Hi i have been going back and forth to Camhs for a long time now with my daughter,i find them very useless saying i think your daughter has got ASD,then to go back the next visit for her to say,well i dont think she has got ASD as the school teacher doesnt think so,i have had a gutful now,the school teacher is no child phycologist.My daughter self harms,head bangs,looses her temper every day and has melt downs which last for about half a hour,if i could afford a private diagnostic i would.Also my daughter has Anxiety and low self esteem.Camhs should be seeing her,our last appointment was 13th January 2013.Not helpful at all

  • Former Member
    Former Member

    if your daughter and your son have autism then i would guess that they have inherited it from you or your partner. I'm fairly comfortable with understanding that i have inherited my ASD from my father, his father and his father before him!

    This often leads to the Catch-22 situation that the people who need to engage with the professionals are least well equipped to communicate well and make the most coherent case for the children.

    Do you think that this might be part of your problems?

  • You can't force her, and anxiety is a biological as much as a Psychological phenomenon. You can't force someone with anxiety to do something anymore than you can force a Depressed person to get out of bed!. CAMHS seem to be acting unprofessionally, and I would have cause to complain. They are not demands, they are very real fears that your daughter has.

  • Ive since had yet another refusal from camhs they are now saying her anxiety etc is copied behaviour from being around it. I don't get it. Im really frustrated now, how can she learn behaviour... they have now referred her to 'no labels' as she refuses to cooperate with her camhs councillor she says they are patronising.  

    Im still going to push further as she is meant to be starting college in september and is terrified. Although I have her in under the learning support team there, she still doesn't know if she can go through with it. Camhs say I shouldn't go with her demands and to force her out of her comfort zone... 

    I'm at a loss.

  • Hi thanks for that i think im pretty sure the bi polar diagnosis is correct. She spirraled into a major depression after an RTA in november but the extreme highs and lows have been present from aged 9 and the voices since aged 7. She is on abilify but has gained around a stone in weight that she could ill afford to gain being chunky and 5ft 1". She has recently also started on an anti depressant as her mood has become a constant low or a 'nothing' as she describes it. She is struggling as she misses the euphoria she once had. Her mood could change up to 5 times a day before but is less frequent now. The abilify has helped her with the anxiety and that was almost instant. I have a friend with bi polar who was only diagnosed in her 30's and there are lots of similarities altho the mood changes are more frequent in children it would seem.The self harming has on the whole stopped for now but i feel may start when school starts again. She likes the lessons and is extremely bright but hates the social side of school she has been consistantly bullied since we moved area when she was 9 :( . There are times when she is so desperatly unhappy and in an episode that i really dont know what to do with ir for her. I have been close to taking her to a&e a couple if times. When your child is sobbing 'please help me' it is heartbreaking.apart from psycho therapy we have been offered no support whatsoever!  Im going it alone and tired of fighting :( x

  • Former Member
    Former Member

    Kadam's shown how to make a case really well:-)

    can i add a suggestion to try and be as calm and reasonable as possible? I'm an aspie and, since diagnosis, i have become painfully aware of my ability to ruin a perfectly good case by becoming beligerent and impatient.

    @kadam i recently read that bipolar can get misdiagnosed in aspies. Are they absolutely sure that she has bipolar and that it isnt't really years of undiagnosed aspie showing up as bipolar? Have a look at this article and see what you think.

  • hi i have recently received a dianosis of aspergers for my 14 yr old daughter. her problems sound so so similar to your daughters and i had been fobbed off for a few years. I pushed and pushed fortunately or unfortunately her mental health took a serious downward spiral so we were re referred to the consultant. I sat and wrote everything down that i could think of that i considered to be traits or quirks. It took me a few weeks but i did it. write a letter demanding she is tested and state your reasons why & include a copy of your list!! also find out who your schools case worker is for educational needs and write to them too! demanding she is tested or looked into for a statement. I did get my 2nd opinion referral and after the appt i was told yes they think she has aspergers!!! at last!! The list i wrote was a major factor in getting that referral. Only you know your child and your information is what will get you there. Camhs only see them for 40 mins every 2-4 weeks and girls are so good at hiding it, it wont get noticed in those sessions. For years i had recorded on file 'shows some traits but not considered enough for referral then along came my letter! they dont want to read pages of waffle like this :) do it in bullet points every little quirk u can think of that she has or has ever had, include the self harm! this is a major safety issue and the depression and inability to function in school. It is hard work but once you get the wheels turning it can be quick. took 3 months from referral for me. she has also been diagnosed with Bi Polar within the same time frame so an awful lot to take in. I am now in the process of securing a statement of educational needs for her to see if i can get her back into school full time as her gcse's start in september. Its not fair but we have to fight tooth and nail to get anywhere. start making your list! and good luck I hope you get results for your daughters sake :)

  • Oh, forgot to say, I don't think the consultant was overly convinced my daughter had ASD at the first meeting but the specialist speech and language test she did gave a clear indication - she scored very low on this and came up with some amazing 'out of the box' answers that made us smile a lot during the assessment.  

  • My daughters school had one of those to fill in but because she'd only been at the school for 1/2 at term at the time, I told the consultant that their answers wouldn't prove much.  They actually gave me a copy when it was sent off which I found useful to compare to mine and their answers had little in common with what I'd put however they did make notes on the bottom of it about the social side of school which gave a lot of indicators to ASD and they also made notes of her learning style which also pointed to ASD.

    I also sent some copies of what my daughters primary school had written as part of an assessment for OT and speech therapy, which although out of date, did give a more rounded picture of my daughters sensory issues.

    Is there a possibility that you could take the form in to the SENCO at school and go through it with her?  I'm assuming that she's dual registered with school and the hospital school though?  Or could someone at the hospital school do it?  My daughter is dual registered and the tutor that she sees a couple of times a week has got to know my daughter very well in a short time and would have been able to fill in the form far better than the SENCO!

  • I would write back sending it back telling them unless they want 2 year out of date information there is no-one you can pass it to.

    It's disgusting how they have treated you.  Clearly she is likely on the spectrum as females often get misdiagnosed with eating disorders, anxiety etc. and with her brother being referred there must be autistic traits presenting in him to do so.  CAMHS are unfit for purpose.  You can submit your evidence of CAMHS failings to the Government to take action here: http://www.parliament.uk/business/committees/committees-a-z/commons-select/health-committee/inquiries/parliament-2010/cmh-2014/ (nationwide inquiry).