To think CHAMS is shit

[shockandawe]

To not even see my ds, and close the referral without even meeting us.

I really fee like not sending my ds to senior school in September. He has such noticeable tics that I really fear the issue will be a whole lot worse once at secondary.

Aibu? Don't mind to hear if I am.

Cleaty, we engaged, but like Obs says, if they don't acknowledge ASD presenting as anything other than obvious, you're not going to get far.
The toughest thing about it was that the experts we were seeing every month did not try to understand the things we were going through.
Our discharge letter is like reading about a fictional family that bears no resemblance to our real life family, that's tough to read!
And it's tough that we're now hoping against hope that we will never need their services again, we will do everything we can to protect our son's mental health, because we have no confidence in our local CAMHS, and we're not alone. Our paediatrician warned us of their reputation.

Someone mentioned lack of funds, I would argue that our 7 family therapy sessions, involving 4 professionals, would cost more than a few 1:1 sessions for ds to get to the root of the issues that have meant he was bullied for over half his life and cannot cope with school. (This is ds1). Instead of family therapy which did nothing.

My fear is that lack of action now with ds2 could mean him needing far more resources in the future, that we hoped some involvement now might prevent.

PhilPhil - you got a discharge letter?? We have never received one, nor any kind of report from the therapist(s). We did receive a letter from the psychiatrist which stated her diagnosis, the diagnosis appeared to put DD's therapist - and the family therapist(s) - noses out of joint. They almost seemed pissed off that she had been given any diagnosis and it was a 'label'. I asked them how they could help DD if they didn't know what was wrong with her i.e. a diagnosis. Lots of "well, we don't like to label them..." and changing the subject. FFS, we are not in the Cold War, why must things be such a secret?

And, I agree, they do twist things you have said to them to get them to fit their idea of what is ailing your child.

7 sessions, each involving 4 professionals, sorry.

We got the letter several weeks after discharge.
The therapist didn't like ds's PDA diagnosis, and was very pointed that it didn't exist (She should try living with him!).
We were very clear that his primary diagnosis is ASD, the PDA part is useful as they are the strategies that work. She didn't seem happy at all that we (in general) know how to handle him, and most of our problems stem from school ignoring his diagnosis.
I think next step is taking ds2 out of school too, everyone's an expert, yet they don't have a fucking clue!

Phil if you are able to take DS2 out of school, it might be the best thing for him - and you. It gives everyone breathing space, and I wish I had done it with DD. It would have got her away from her 'friends' before they told her she would be unloved forever and die alone. She believes it to this day. And CAMHS wanted her tested for autism as she said she felt upset by the bullying. (DD and I saw the family therapist write "autism" on her notepad and circle it when she said that)

I'll keep waiting for a discharge letter, then. If it fails to materialise, I will ask our GP if he has received anything from them.

Should be a very interesting read ...

Your poor dd

DD wasn't tested for autism as they made a mix up with the appointments and some of the procedures weren't followed (form filling). I do remember thinking that who wouldn't be upset with comments like that from so-called friends? You don't have to be a person with autism to feel upset by those words, surely?

I see those same teens who said that from time to time and it gives me such anxiety, and takes all my restraint and resolve not to lash out at them, especially as they seem so carefree and happy. All the while my DD has been crushed and forever changed.

Cleaty, not engage? Really? That's quite an assumption.
Which poster isn't engaging? How did you come to that conclusion?

We begged or family therapy. Denied for years. But then finally given it. Therapists said family therapy was not for us. They said the system had failed us. She said My parenting was good, but ds1's problems - ASD & also PDA traits meant she couldn't help him.

Shockandawe - have you tried Young Healthy Minds? They are a Kent based emotional wellbeing service, referrals can be made via KCC Early Help. www.cxk.org/young-people/emotional-health-and-wellbeing/young-healthy-minds

Obs - did the therapists give you any answers as to who could help your DS1?

And yy to the poster who said they don't accept children with ASD

I work in Tier 3 CAMHS and around half the kids on my current caseload either have a diagnosis of ASD or are waiting to be assessed by the Neurodevelopmental CAMHS team so this isn't necessarily the case.

Saying "CAMHS is shit" is a bit like saying "hospitals are shit". There are CAMHS services operating in every town and city in the country so they are not all the same and some are bound to be better than others. Sadly, it is a postcode lottery and that's completely unfair but unlikely to change anytime soon given the current government.

There has been huge emphasis in recent years on "patient feedback" (gathered through surveys, focus groups, service user forums etc) and in my particular team what we are consistently told by families we work with is along the lines of 'once we were in you were great but getting in was a complete nightmare'. This is partly because reduced staffing levels means people have to wait longer but is also because our thresholds have gone up massively. Many of the kids I'm working with at the moment would have been in hospital a few years ago. Consequently I spend most of my time on crisis management and my colleagues are all in the same boat. This means we have had to stop doing a lot of things we used to do.

We'd all love to be doing the early intervention/preventative work we used to do back in the day but, even if by some miracle the commissioners would fund it, we're too busy fire-fighting. A lot of people on this thread have talked about feeling "fobbed off" because CAMHS have sent them to other services. The difficulty is that most CAMHS teams simply aren't comissioned to do Tier 2 level stuff now, many of those services are going out to tender and NHS trusts are losing the contracts because external providers come along and promise to run them much cheaper. Unfortunately, they're often cheaper because their staff are unqualified and they don't actually have the skills to offer the therapies/interventions they claim to offer. We can't do work with families that we aren't commissioned to provide, so we have to send them to the services that are commissioned to provide it, even if we know that those services aren't great.

CAMHS is shit. Totally incompetent shit. We have been waiting for an assessment for 2 1/2 years. Now our CAHMS assessor is about to leave on maternity leave (and is jot being replaced) she is trying to get things finished. She never been to a school meeting, never observed him in the classroom - only made empty promises. Now we find that the school don't have their copy of the assessment forms and never had them from the start. So 2 1/2 years for nothing. And now what? Nothing. And he suffers as a result.

And I have to say again, I have been involved with CAHMS with 2 DC, both were assessed for ASD, one diagnosed (the other wasn't but was still treated). Our experience has been great, but we were fortunate to be seen - and in both cases needed a crisis reported by an outside agency.
And I doubt I live in the same area as Yorkshapudding.

Of course the bottom line is: why are we having such a crisis of mental health in young people. If a suicide attempt at least is often the gate keeper to access CAHMS, and I've heard of young people still not receiving help even then, this must be much worse than when I was their age.

I agree with everything yorkshapudding said, exactly the same in my team.

Labels aren't helpful is something I am told repeatedly about my ds by camhs. This boils my piss. Seriously, yes they are. To access appropriate support, help in school and make reasonable adjustments. Since Salt and paediatrician diagnosed him with ASD it's been so much better for dealing with issues in school. Not when the person at camhs smiles, nods and does that wish I washy non commital thing some of them excel at.

Yorksha, I understand what you're saying, but for those of us who aren't (yet?) at the crisis stage, I personally would rather have an honest "we'd like to help but because of xyz, we simply can't" instead of what felt like us being slyly managed to discharge with no advice at all.
Why couldnt our therapist offer some advice at least?

I do understand the CAMHS is stretched beyond capacity, but they saw us for two separate appointments with ds2, 7 for ds1, why not make that time useful, for them and for us?

Yorksha, I understand what you're saying, but for those of us who aren't (yet?) at the crisis stage, I personally would rather have an honest "we'd like to help but because of xyz, fwe simply can't" instead of what felt like us being slyly managed to discharge with no advice at all.
Why couldnt our therapist offer some advice at least?

Well, obviously I can't speak for your therapist just because we both work in the same field. Without knowing the specific details it's impossible to say. CAMHS do provide advice, liaison and consultation to parents, schools and other agencies all the time, at least where I've worked and I've worked in CAMHS teams in four different NHS trusts in my time. If I assess a young person and feel that our service isn't able to meet their needs or that they don't meet the criteria for a specialist mental health service then that's what I tell the family. I have nothing to gain by stringing people along or misleading them. If I wasn't able to offer onoing work I would always try to give advice and strategies, signpost to more appropriate services and recommend resources/self help materials that might be useful.

Thank you for answering.
We were told that advice/strategies etc were beyond their remit.

If nothing else, the past few months/years have proved to us that we're on our own and shouldn't rely on anyone but ourselves to help our DC, but in the more difficult times I have to admit it's quite frightening, having to tackle things with no expert backup.

Medusacascade - CAMHS' utter reluctance to diagnose or 'label' a child's mental health problem is somewhat perplexing. Surely, the first port of call is to diagnose the problem before it can be treated, otherwise how can CAMHS treat it properly?

DD's therapist wanted to focus on CBT, which was not what the psychiatrist said she should receive, but her therapist insisted that she finish the CBT course and then "if we have time" we will do "a bit" of XYZ therapy. A bit?? I asked repeatedly if she could stop the CBT and go straight onto XYZ therapy, but no. Consequently, DD felt that she wasn't being listened to, and the therapist wasted her time because CBT was inappropriate for her situation.

When the psychiatrist gave her a diagnosis/label, it gave us the power to respond to DD's issues/behaviour differently as we had definitive evidence that there was something wrong and not just teen angst. Since the therapists appeared to know very little on the subject of the diagnosis (not rare, either) I resorted to google for answers, which I shouldn't have had to.

The therapists were totally bemused and unable to get their heads around the fact that a 'label' that they so avoided giving her had actually helped us.

They really, really couldn't see it.

Yorksha and stilllovingmysleep - could you tell me something as I never received an answer from our therapists?

DD had a crisis (or two) and we had found notes detailing her dark thoughts, which gave us serious cause for concern for our lives and hers. I took them to show the on duty psychiatrist, who refused to even touch the papers, never mind look at them. I am not ashamed to tell you that I went on my knees in absolute floods of tears and begged them to see what was going on in her head, but she just wouldn't. So I started reading them out loud. She stopped me, and talked over me when I tried to continue, and her solution was to give DD some lorazepam to calm her down.

I then took the letters to the family therapist who saw us (because DD's therapist was 'training' again) and she wouldn't look at them either or hear me read them to her. WHY? Why wouldn't they read them? Even when we said that all our lives were in danger, they treated us like it wasn't that serious. More lorazepam was given for her "low mood"! Low mood?! She was extremely depressed (now taking max dose of ADs prescribed by our GP), not some trifling "low mood"! They didn't appreciate the gravity of the situation.

Why wouldn't anyone read these notes/letters? They would then have seen for themselves what turmoil was going on in DD's head. Please don't say "invasion of privacy" as they were only to happy to invade her privacy by reading something else without her permission and caused another massive episode.

I still sleep with one eye open...

No, the day I broke.No suggestions of where else to go.

Your user name suggests to me that you too have been where I've been - on the floor, on my knees.

Like many others on the SN boards. frightening.

I worked for CAMHS many years ago and also have second hand experience of the current situation via a family member.

It was rubbish many years ago and is rubbish now.

I do understand that it is underfunded and that there might be pockets of good practice, but I can only speak from my own experience.

Just to give one example from my period of work in CAMHS - a boy of 9 had been soiling for many years; he was being treated with psychotherapy and had been all those years. One of the psychotherapist's observations from his drawing two tulips was that these represented "two lips" and thus told us that he was missing being breast fed! I told the mother to go back to the GP and insist on a referral to a paediatrician - this happened and he was diagnosed with a treatable bowel disorder. His poor mother had slaved away for years trying to deal with this with no washing machine; the mother/son relationship was damaged; and vast quantities of public money has been wasted.

Fast forward to now. A mother rings the CAMHS to which her child had been referred and is told that there are no professional staff in the service at the moment, and she is a receptionist who just there to tell everyone who rings that! Eventually they saw various members of the team who failed to notice the ASD and ADHD, but just set the parents off to parenting classes. I recognise that in some circumstances this could be useful; but it was inappropriate in this situation without a proper diagnosis and help for the boy. Throughout this time the "professionals" decided not to treat the boy directly because he would not "engage" - so rather than face the struggle to get past this and help this boy, they took the soft option of "blaming" the parents.

This child is now a delinquent and seriously dangerous young adult and is consuming vast amounts of police and court time - what a waste of his life!

Obs - yep, the day I registered on Mumsnet (after lurking for yeeears) was the day I broke. I had been so determined to keep my head above the water, but that day, I realised that things will never "get better" and I was unable to help DD as I felt like I was fighting the "professionals" and her. That realisation broke me.

I felt, and still feel, like the worst mother in the world having brought DD into it to suffer so much .

obs - it's such a lonely place where we are.

Sure is. The loneliness. The regrets I have. Angry at myself for my naivety. Fighting and fighting. Wish I'd never bothered. what a waste.