Here some suggested organisations that offer expert advice on SN.
CAMHS' experiences(118 Posts)
I wondered if people had experiences of CAMHS they would be prepared to share (anonymously).
A Commons Select Committee is doing a report on CAMHS - see here and we would like to submit some evidence.
A few of us have formed an organisation called the Educational Rights Alliance (see here). This has kept me really busy so I haven't been posting as much of late.
We wanted to try and use our experiences where we can to lobby for positive changes so please do contact me on firstname.lastname@example.org if you want to share anything. Or if you want to get involved.
Your anonymity is absolutely guaranteed.
Just wanted to add as well that we will share a draft of what we write with all those who contribute to make sure that what you say is reflected properly in our document and that you are happy with it.
Posted, so I can find this again and have a read. Thanks.
CAMHS have been utter tripe in my poor DCs case. No help, only judging.
and Im using the word tripe as a substitute for the word id really like to say!
sorry, but I haven't heard of any success with CAMHS with people I know, I don't know why these 'services' are around, they seem to have no idea what theyre doing. no communication, me being told how to bring up my own child-and im a competent,( if disabled) person, loving and nurturing, only go there as DCS disabled especially mentally, and all I get is flack from them
id like to tell them to foxtrot Oscar tbh and just get on with it myself instead of the pressure I get from them, IF they bother at all to see us.
they can see DCS loved/clean/well fed/very loved, yet make me feel like shit sometimes. im mainly physically disabled yet they make me feel like Im mentally deranged. I have all my faculties about me.
and yes im having a rant as I saw them yesterday after months of being on a waiting list. and breathe........
I have found with CAMHS they are a family service, which means exactly that, they provide strategies to the family, namely the child and the parent. Which can be useful, IF you need strategies and IF these are the only strategies needed.
However they are not very helpful if the strategies needed are outside of the family. At school for example or education.
I am all for empowering the child and the parents to cope with behaviours, however CAMHS need to widen their service and take a holistic approach, to include school, where a child spends the majority of their time and who are sometimes not supporting the child's difficulties at all. To keep the onus on a child/parent and to keep expecting a child/parent to try harder, when adults (school) are not, is just counter productive.
Our Dr at CAMHS is the only person who has got my back at the moment. If I think I need more respite or an OT assessment for my Ds, for example, she works on my behalf and has good suggestions about what might help. We don't get regular enough appointments though - once every 6months or so.
Wasn't sure whether I should post here??
Cahms in our case have been horrific refusing to assess despite 7 day assessment referral by a&e lied to another HCP saying I refused treatement for ds when they never spoke to me and the latest round is they refuse to help despite ds walking out the meeting saying well I'll just go kill said family member then
Ds has been under a Consultant Psychiatrist at CAMHS for 3 plus years. He's 13 now. He has ASD and OCD. He takes Prozac. When he's well, we dip in and out of the service with 3 monthly appointments. When he's poorly, I can ring them and they'll see him pretty quickly. He's also had 3 courses of CBT there but that hasn't been of much use as he spouts all the rhetoric at the (lovely) counsellor and then, as we leave the building he starts all over again! It's like the CBT never happened!
Right now he's really poorly. We see the Dr next week. What I will be asking for (and I'm surprised it's never been offered) is some regular counselling to go along with the Prozac. Surely, this would help? Ds has massive anxieties/fears which fuel his OCD. He can't talk to me (or anyone we know) about it so, counselling with a trained therapist?
Eliza - wow, that sounds familiar. Had to check I hadn't posted under your name!
DH and I have had a lot of very poor experiences with CAMHS, with better experiences recently.
When my son's behaviour first became problematic, CAMHS treated us as if it was our fault and we were simply 'anxious parents'. When DS's tics and OCD became horrendously difficult and we needed an emergency referral to CAMHS (after having been discharged before, with no support), we saw a counsellor who asked me why I wanted to medicalise my son. So, we were just being anxious parents again, apparently .
After six years of dipping in and out of CAMHS and repeated requests for assessments, we finally saw a CAMHS psychiatrist who diagnosed him with Tourettes with OCD.
We still wonder if he has ASD and I am not confident in the assessments we've had at CAMHS.
How much information do you need, op? I am only skimming the surface here.
ToffeeWhirl Have you seen this
I've C&P the relevant bits here:
Below are some of the areas we would like to hear about:
(i) what was the nature of your experience e.g. why your child see CAMHS, how easy it was to access the service, how long did you access it for, who did your child see?
(ii) what was the quality of your experience e.g. what were the problems you identified during the process, and what were the good things?
(iii) based on your experiences, do you think there are any 'lessons' which should be learnt?
Well, I haven't been able to see CAMHS yet, despite my GP's "Urgent" referral on May 30th last year. I have an app booked for April, after arguing for it not to be postponed from March to June.
Here, we have to go through PCAMHS first, and I have spent so much time on the phone chasing people who do not return my phone calls, or even turn up for meetings with my child.
To date, I have my GP, Young Minds, and PCAMHS saying my child needs to be seen by CAMHS, yet still no help. Not impressed I have to say.
sunny - that's appalling.
NoRunAround - thanks, I'll have a look at that link.
Oh dear, some grim experiences here. Makes me feel quite lucky. I do feel though, that my ds needs something as well as a prescription for Prozac.
We have had mixed experiences. I will try to write something but things rather stressed here at the moment.
Eliza medication on its own never helped my ds. He wouldn't talk much or at all but could manage a structured programme that worked on his acutal behaviours.
Have you had a referral to a more specialist service?
Holding, no, no special referral. Ds diagnosed with ASD aged 4 and then OCD aged 10. I WILL be asking for something further. I feel I have failed my son. Everyone told me "he's very bright, he has "mild" autism". He has a good vocabulary and IS bright in many ways but, is typically autistic IMO. I just wish I'd done more. I had to push for diagnosis. Then push for a Statement. Then it was DLA. Then it was Mobility (he gets low rate. He cannot go out alone, at all, at 13). As a single mum, I was utterly wrung out with it all. And yet.....here we are at 13 with NO friends, NO social outlet, barely able to function in school, spending huge parts of his day in the Quiet Room/Sensory Room or being helped to walk down the corridors after everyone else is in class so as to appease the bloody OCD gremlin. Something HAS to change! I'm going to be expecting answers as to what the actual fuck is going in with this bright child with "mild" autism?"
As you can tell....I'm at the end if my rope.
Thanks all. Do please post here if it is easier or you can email us directly. We will share our proposed recommendations before we file.
we had a camhs appointment which just so happened to be the day after my dd much loved pet died, at the appointment she sat and sobbed, didnt speak once or engage
at our next childrens unit appointment they read out the report from camhs which simply stated dd was a delightful child who seemed very happy/engaging and mum coping well!!!
i accept they have long waiting lists, many pressures but it would be nice to feel they actually 'see' the individual child in front of them
We saw PCAMHS when dd was 4, and the lady gelt asking dd to "draw daddy as a monster" and "if daddy was a monster, what would he look like?" etc. Eventually, dd said "I think you should stop talking to me now and talk to mummy"!!!!!!!!!
However, dd was not referred to CAMHS back then. We had to wait until her behaviour escalated to violence before we started this current merry-go-round.
Translation of CAMHS speak for baubles:
"delightful" - child did not spit, kick or attempt to run out of the room
"coping well" - mum did not cry during the appointment.
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