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CAMHS' experiences

117 replies

inappropriatelyemployed · 17/02/2014 19:36

Hi all,

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 [email protected] if you want to share anything. Or if you want to get involved.

Your anonymity is absolutely guaranteed.

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pencilsharpener · 28/02/2014 10:35

Another one here whose experience of CAMHS has been that the whole system seems to be on the verge of breaking point. Numerous people going off sick for extended periods, people regularly not ringing back, unacceptably long waiting times for appointments, an inability to tell you how long you will have to wait to see someone etc.

I have hand-delivered a package containing highly confidential information to the front desk at CAMHS only for it to go missing within the building somewhere for 6 weeks.

I have also been at the point of despair, crying down the phone saying I cannot cope with the violence from my DS any longer/I'm on the verge of quitting my job because I cannot cope and can someone please phone me back. They didn't phone me back.

ReadyisKnitting · 28/02/2014 12:06

PipinJo, that was really interesting. My experiences of CAMHS have left me very bitter, and extremely mis-trustful (is that a word? I don't trust the buggers!)

I first referred ds to CAmhs when he was 5, while we were in the refuge, and it was in-my-face obvious that he was different. I was told to give him lots of hugs.

When ds changed schools in yr3, not long before his 8th birthday, the senco at his new school asked if he had ever been assessed for AS, as from her experience he had a lot of similar traits. We had him referred, because his 'differentness' was having quite an impact on his education. The first Camhs worker we met with was an adolescent mental health nurse. In her opinion the was no chance of ds being on the spectrum because he could make eye contact and have a conversation about trains. She had a telephone convo with xh (alcoholic, emo and physically abusive) then made a referral to social services accusing me of emotional abuse. I now have a copy of the referral, there's a lot of quotes from the xh that she's based her judgement on, and some very damaging and obviously incorrect assumptions. I complained, on the back of that camhs reassessed ds, and came up with a preliminary dx of PTSD. Which kinda made sense, given his experiences. Meanwhile xh had made another of his malicious allegations to social services and I have social workers coming to visit, and the fear of losing my children as that was what I had had 7 years of hearing form xh, and I was turning into a wreck. So that was up to August.

In September I enrolled for the IAPT course CAMHS had pushed me into taking (bullied? Felt that if I didn't go they'd make more accusations) I was also back in court against xh, where his barrister claimed the dx of PTSD was incorrect because the DV had never taken place Hmm. I went back to CAMHS, explained this and they decided to do a second opinion, which came up with a dx of AS and ADHD. In between the decision to do a second opinion, and the dx, the CAMHS worker spoke to the cafcass officer, and made some more inflammatory claims. That I was trying to pathologi se (sp!) ds, and that all his issues were due to my parenting. That during the course I was standoffish and PA, and accused me of self harming within the last 6 months.

So now I still have social workers assessing me, Ds struggles with contact, there is a clear 2 weeks cycle in his behaviour that ties in with the 2 week contact schedule. He is behind by 2 years in his work, and a good day is if he isn't too disruptive, doesn't make too many noises (which are attention seeking) and doesn't disrupt any other child's learning. DS often has massive outbursts at home, and it's hard for the dds. I am still a nervous wreck. There is a massive paper trail accusing me of harming my son, and now despite this dx, and the social worker saying she can see nothing wrong with my parenting, I worry about losing my kids. On one hand she's pushing me to see if CAMHS can offer any support, yet at the same time she is saying she has a child on her books with far greater issues, that she cannot get camhs to support.

Camhs are a waste of f@@king space, in my opinion. The main worker who made all these allegations to cafcass is a clinical nurse. I have since gone is, and spoken to the team manager, and someone from PALS who handled my original complaint about this, but as usual, no apology, no nothing. They don't care. And anyone who need support is on their own. I would have to think extremely hard and carefully before I ever went near CAMHS again.

ReadyisKnitting · 28/02/2014 12:08

Sorry that's so long. It was very cathartic!

Swanhildapirouetting · 28/02/2014 12:29

I feel reading your post that I got off lightly Sad Ds2 with Asperger's was newly diagnosed at 8, and as a family we were under tremendous pressure, with dd lashing out and all three siblings reacting to each other, and Dh reacting to that, and me reacting to that.

Now it is easy to see in hindsight, oh yes go and read the Explosive Child, and Tony Atwood and then you'll be better at parenting this ASD child and dealing with family issues as a whole. But to be told when asking for further help with ds2's behaviour (having assumed that that was what CAHMS did - advise you on how to deal with your ASD child - duh, that was silly of me, no of course they don't) You shouldn't have had three children as you obviously cannot cope with them, and have you sought help with your mental health because you are clearly upset (yes, I'm asking for help with the AS that's why I'm upset) It set me back several months to be told I was bad at parenting my ASD child (and the others) when this ASD child presented as virtually NT for several years due to the enormous amount of time we spent responding and adjusting to his needs before we even knew he was ASD (rather like your cuddles)

So I have every sympathy with you, and horror at how easily they can distort and misuse information.

mummytime · 28/02/2014 12:35

Okay I have to write, because actually CAMHS were okay with me. Obviously I'm lucky.

From the first assessment visit they suspected DD was on the spectrum, and also realised the schools assessment of her was wrong on so many levels.

She was diagnosed relatively quickly, and I had no problems of anything getting lost. It did take a long time after appointments for a simple 1 page letter to get out, and I have no understanding why it should take so long.

My biggest criticism is that it seems to be a case that we will give you a diagnosis but we can't offer anything else. So whilst DD was being diagnosed I got some tips on techniques I could use to help her, but then pretty much once we'd got the diagnosis we were discharged.

But I am obviously very very lucky.

sbutt78 · 28/02/2014 13:18

I feel I have to comment because we have had a lot of contact with CAMHS and actually feel that they have been helpful.

We were first referred when DS was in yr1. At the initial meeting I felt welcomed and the gentlemen seemed eager to hear what I had to say, then I got the report which seemed to blame his behaviour on mine and his Dads break up, it also said that I was to do a parenting course, which at first I felt abit Shock!

It was left there but a year later, I had done the parenting course and things were worse than before I did a self referral. The appointment came straight away, I felt that they took me more serious this time and as well I had letters from the school etc too. Then the school got involved and since then things have been great. We've got behaviour support observing and giving their advise (which even if some of it is a bit wishy washy I'm willing to give it a try)

Overall I think I'm happy with the service/support they have given to us!

Oblomov · 28/02/2014 17:55

Camhs actually diagnosed ds1 with AS. They weren't going to give me the diagnosis , because apparently he was fine in school ( idiots), but I insisted.
Then we were discharged. Nothing.

Then ds1 wanted to die. Back to camhs. They said they couldn't help us. They didn't have facilities or resources.

Useless. Why are we funding these incompetent depts? Are they accountable? Their service is a disgrace.

Nerfmother · 28/02/2014 19:54

Might help you to see a pattern if people pm you with area?

PipinJo · 01/03/2014 01:15

This reply has been deleted

Message withdrawn at poster's request.

LetZygonsbeZygons · 02/03/2014 19:32

Ready Sad. you are spot on though, Ive had similar experience too. Im so sorry you're going through all this.

and ^ pipinJo too. spot on.

LetZygonsbeZygons · 02/03/2014 19:33

In fact everyone complaining. all correct. Why ARE we funding this? and all other so called services?

Ive just sent yet another ranty letter to a 'service'. im sick of it.

MariaNotChristmas · 03/03/2014 13:36

I have a lot of sympathy with the CAMHS professional who posted above. They are hugely overloaded, underfunded, and often good at their areas of expertise: 'pure' psychiatric disorders like depression or teenage psychosis, and illness caused by complex emotional and family dysfunction.

But I really don't know why we are funding CAMHS to do ASD and ASD. I've found the ordinary GPs and paediatricians to be much more helpful, as they deal with disability and neurological disorders all the time. IMHO they assume most parents are good-enough, even if the situation is difficult.

Regular CAMHS are particularly useless at child neurodisability, maybe because they are often specialised in the psychosocial model and in working to change dysfunctional family systems. The learning disability branch of CAMHS seems to be much better, more like 'normal' paediatrics.

MariaNotChristmas · 03/03/2014 13:39

Compare cerebra with young minds.

The reason half of cerebra's core clientele are expected to consult a service specialising in young minds type problems is a mystery to me.

MariaNotChristmas · 03/03/2014 13:40

DS is under a paediatrician, thank goodness. But only because he was referred in reception class, and not afterwards.

LivUpNorth · 03/03/2014 18:45

Re CAMHS and ASD, it's surely not a simple relationship?

Mental health issues cross over with anxiety and self-harming behaviours and eating disorders, and I would guess that lot of their referrals will have undiagnosed ASD, or be in the process of being diagnosed/assessed.

And of course this also means that family members are likely to have related ASD issues.

We have been 'through' CAMHS with DD - we don't know if she is on the spectrum but she is very anxious for no apparent reason so it's a definite possibility. She has done a CBT course and we have done a CBT parenting course. The courses were okay but that seems to be pretty much all you get offered before being discharged, unless there's an acute ongoing problem such as anorexia. CAMHS can't even refer for ASD assessment in our area, you need to go through GP or schools.

There seems to be a lack of joined up service. It would seem to make more sense for the CAMHS service to work more closely with the medical, OT and SALT services.

Flappingandflying · 03/03/2014 20:04

I've made a referal to Cahms which they have accepted but said that the child concerned is on a waiting list of months. Any other service, eg cancer, this would be unacceptable but somehow mental health services its ok. The service is overburdened, clearly underfunded and professionals must feel overwhelmed. Tanya byron has written a really good article about it in Saturday Times.

streakybacon · 04/03/2014 07:16

I read that article Flapping. She talked a lot of sense, didn't she?

mummytime · 04/03/2014 07:43

Well when we were referred to CAMHS it was for a mental health type issue. While being assessed for that the CAMHS professional assessed DD as of low risk, and spotted that her problems could come from undiagnosed ASD.
I was given the choice of having CAMHS do the assessment of having her referred to the Paediatrician. I choose CAMHS, mainly because we already had a good relationship with the person there (a good thing in some ways as the Paediatrician we'd have probably been referred to is someone I know, and it wouldn't have been as easy to see them in this process).

Of course once we got the diagnosis we were discharged with not much more help, but that was little different from a Paediatrician from what I've heard.

LetZygonsbeZygons · 04/03/2014 17:09

Pencil that's awful and I have exactly the same problem so I completely empathise. Nothing Ive done/said/threatened has helped.

Oh, except them then accusing ME of unable to cope as a mother FFS.

Ive just not only sent a strongly worded letter to the 'services' but also to all local mps.

bet you anything I get NOTHING back.

should copy and paste this thread to them too. its a thought.

inappropriatelyemployed · 05/03/2014 07:56

Thanks everyone. I have read all this with interest and I am hoping to put something together within the next week which I will post here

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Emphaticmaybe · 06/03/2014 14:38

Our experience of CAMHs have been mixed.

There are obviously some very dedicated and empathetic HC professionals working in the system and I agree that many of the issues regarding accessing help are down to underfunding and the subsequent cutbacks but as someone mentioned above there is an element of inefficiency. Is it really necessary to see so many different professionals over so many weeks and months, to explain and re-explain the issues as your anxious child becomes more and more anxious before the right 'therapy' can be decided on?

This happened with our eldest DS who has ASD - 18 months of trauma in the system before he was finally allowed to see a psychiatrist who prescribed an SSRI. As parents we knew that this was the right course of action from day one as by the time he was referred to CAMHs we had pretty much covered all the therapy alternatives ourselves. It was frustrating not to have our insights and suggestions listened to - to effectively be made to jump through every hoop, (CBT, EMDR, various relaxation techniques not including the many therapies we tried and paid for ourselves) before our DS could access the medication he so obviously needed. His life was transformed within 3 months of starting treatment and we were so grateful but why did we have to go through months of avoidable anguish to get there?

LetZygonsbeZygons · 06/03/2014 17:31

well DCs just been case closed yet AGAIN !! Im FUMING!

poor things got terrible disabled issues, both physical and especially mental (Without tmi, her and I were abused by my ex. in every way.)

as an adult i can (sometimes) deal with the issues but a child born disabled and mentally disabled is absolutely traumatised and never can get over it. and where I can help/advise/comfort in many ways, i cant do it all.

im furious. they say they cant do anything with her, yet they never give me any other options.

useless. TOTALLY USELESS. the whole bloody lot of them.

inappropriatelyemployed · 13/03/2014 11:54

Hi all

Thank you so much for sharing your experiences.This is really valuable information.

I hope to put something together at the weekend and will post a summary here.

Thanks again to all Thanks

xxx

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inappropriatelyemployed · 17/03/2014 11:14

Hi all

I am in the last throws of drafting this report.

If you would like to read a draft - can you PM with your email?

I must warn you that the word limit for our report is 3000 words which is nothing!

This means that I have tried to reflect main points and that I have not been able to put all the valuable detail of your stories in.

If your story is not quoted, please rest assured, it has been read and has contributed to the report in terms of the points made

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inappropriatelyemployed · 17/03/2014 11:22

In fact, if you would like to see a copy, can you send me an email - entitled CAMHS - to [email protected]

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