AIBU or are CAMHS really REALLY SHIT

[Anonquestion]

I feel like I have been trapped in some sort of nightmare with them. My daughter is now 14 yrs old and was first seen by them 3 years ago when her behaviour started to severely deterioarate with the move to secondary school. We first did brief solution focused therapy with her, 6 sessions over about 5 months due to staff being off sick, on AL etc. It made absolutely no difference, if anything it made herore anxious. This was followed by 'family therapy', which she hated; a lot of pressure was put on us to have it filmed for staff training which made things worse. This was with another 2 members of staff, one was an ex-pschiatric nurse the other had a degree in psychology. We were then told there was nothing more they could do but send us on a parenting course run by the early intervention service, this was absolutely shite, really obvious stuff like 'don't hit your children', 'try not to lose your temper', stuff which we already knew. Me and my husband feel very strongly that our daughter's got ASD and she is now being seen by someone else (another ex psychiatric nurse) who is trying to get her seen by a doctor for a diagnosis and also maybe looking at giving her some anti-anxiety medication. The whole time we have been treated so badly, the first two years as though her behaviour was due to really bad parenting - we're not perfect but I really don't think we are that bad. All of her behaviour suggests to me she has aspergers, I have worked with other teenage girls who have it who are so similar to mine; coped well up to adolescence but now really struggling, meltdowns, routines extremely important, can't change plans, v inflexible thinking, reeling off sentences which are direct quotes from books, lack of eye contact, obsessions with different hobbies then dropping them suddenly etc. I just feel if anyone actually spent some time with her and got to know her it would have been pretty clear. Instead we are treated like Munchausen's parents for even suggesting she may have ASD, treated like we are terrible parents. I'm at my wit's end now and don't know what to do. I can't believe how awful our experience with CAMHS has been. Am I being unreasonable?

I have a strong forrin accent and an unfortunate tendency to spoonerisms, especially when stressed !

The.former really should not matter, but I guess that the latter can sometimes make it hard for people to take me seriously...

My son can be suicidal and will put things round his neck and tighten them. We were discharged with a letter saying this was normal for children with ASD. Really? Fucking really?

It is certainly not uncommon for young people with ASD to display these behaviours, which are very often the result of extreme frustration rather than being indicative of genuine suicidal intent. BUT that doesn't change the fact that there is significant risk associated with those behaviours and, as a CAMHS practitioner, I would be concerned about the risks to any young person who was repeatedly tying ligatures whether it was clear they were doing so with intent to end their life or not. Whilst not every young person who ties ligatures as a means of coping with difficult emotions has a diagnosable mental illness or necessarily needs long term therapeutic input from Tier 3 mental health services, they certainly do need some support to develop alternative coping strategies for managing their distress. This may be as simple as giving advice regarding self help strategies, bibliotherapy etc that parents can use at home or they may need a few sessions with a CAMHS worker to think about their self harm, the purpose it serves for them and whether there are alternative ways for them to communicate their distress or manage their feelings, depending on the child in question. To discharge a child who has a pattern of tying ligatures without offering that support is a deeply questionable decision in my opinion.

Lynda yes of course your view about your child is your opinion. Also your paediatrician had his/her opinion. I ask you (as I wrote above) to consider in good faith that other people in various cases may have differences in opinion. In mental health there is rigorous debate and nothing is gospel, things are discussed in multidisciplinary teams in open and complex ways. Everyone has an opinion, based on their experience and training, as do you, based on your experience as a mother. Nothing is written in stone.

And also: "that failure to hear what parents and children are saying is, I suspect, behind an enormous amount of the frustration that a lot of parents have."

Failing to hear is not the same as having a difference of opinion in certain points. Two very very different things. It seems you are saying that the only way someone can hear you is by agreeing 100% with everything you say. Well if you feel that way and don't trust specific professionals, just don't go to them, end of story.

Phil, you are a brilliant parent. I wrote two thirds of a very very long post ...and the phone rang, dinner was ready and it was all gone.

In short, my experiences are that CAMHS ate badly organised, inexpert, don't listen and run the service for their convenience rather than the patients/patents/families they should be and are paid to help.

If I needed an operation I expect to be take decisions based on the advice and observations if a senior registrar at least. I would never expect to take that decision in collaboration with just a nurse or therapist of some sort. Exactly the same goes in relation to my child's mental health.

If CAMHS require any further input in relation to my DD, it will be via a psychiatrist - NOT a nurse. She is far too important to me.

I should never have had go ask the role and quals of the Primary Mental Healthcare Worker who assessed my DD. Still not sure what her exact role and responsibilities were. Would have inspired more confidence if she'd removed her gum for the assessment and when debriefing me. Did nothing to inspire my confidence in her professionalism.

A tip for the CAMHS people on the thread too. When you deal with parents would you mind awfully using their names. Two people in this world may address me as "mum" neither is an HCP. It is so patronising. My name is Mrs Apples unless you ask to call me Ripening. It's not hard to be respectful but of course that doesn't help with institutionalised disempowerment. If you can't be bothered to use a parent or carer's name it says one heck of a lot about the extent to which you respect them.

RipeningApples agree 100%. Have never in my life called a parent 'mum' and hate it when others do. I also hate it when nurses or doctors address me as mum in any context so I'll never do it to others.

"A tip for the CAMHS people on the thread too. When you deal with parents would you mind awfully using their names."

I already do this actually. I don't understand why someone would feel justified in making sweeping generalisations and assumptions about an entire profession based on their own personal experience. I agree it is patronising when HCP's and other professionals address the parents of children in their care as mum or dad. However I would argue that it is also more than a little patronising to refer to CAMHS professionals as "the little darlings" and dish out "tips" to the CAMHS workers posting on this thread based on your own preconceived ideas and assumptions about how we practice.

I hate being called 'Mum' as well! It's so rude. I wouldn't talk to my clients like this.
Also hate how people who are not qualified to make a diagnosis of ASD are the ones ruling it out and stopping us seeing the people who are qualified to. Gatekeeping in the extreme!

I think that tomorrow I will ask GP to refer to paediatrician, DD's dyspraxia was diagnosed this way. Also going to start applying for DLA and saving to see Daphne Keen or similar. Xx

Probably Yorksha* because personal experiences are all they have to base their assumptions on. Makes sense therefore to ensure the standards of the whole service rise to the top.

I probably said "little darlings" because in my 26 years at work I have never had a job where my clients would have accepted a 9-5 service and I've never provided anything so important as MH care. I'm certainly not stupid enough to think it's only required on a 9-5 basis. You do know I suppose that most children in tier two are attending school (their parents may even have full-time professional jobs where rendering a 9-5 service doesn't begin to be acceptable. It's gravely concerning that an hcp can't see that it isn't helpful for dc who are still at school to miss rafts of it because CAMHS interventions are only available at CAMHS convenience.

Who's used the term 'little darlings' yorksha?

still - well, it's not really my opinion. It's the opinion of the medical professional who assessed my DS. He may be wrong of course! But we'll see what the next paediatrician says. And then I shall just have to go with their opinion. As a layperson, that's all I can do.

And I'm not disagreeing with differences of opinion. I accept that someone with a psychology background is going to approach an issue totally differently to someone with a medical one and probably reach a different conclusion. But the issue I had and that has been cited by so many people on this thread is the feeling that a hyphothesis is formed first and then the facts are arranged to fit it afterwards. That may of course be erroneous but if enough clients are feeling like that, then perhaps practice needs to be examined?

DS did see a clinical psychologist at CAMHS and she suggested mindfulness which has been helpful so my experience wasn't totally negative. But as I said earlier, they wouldn't be my first port of call in future.

Having reviewed my posts it wasn't me although I thought it might have been because sadly it is how I feel.

You do know I suppose that most children in tier two are attending school

No, Ripening, despite having worked in Children's services for the best part of a decade I had no idea that most children attend school
Unfortunately, individual CAMHS workers have no control whatsoever over the operational hours of the service. I agree that expecting young people to restrict their mental health crises to office hours is ridiculous, unethical and a complete false economy but blaming CAMHS staff for lack of out of hours provision is just as ridiculous.

Stillloving, will try to address your points.

I get that the therapists have extensive experience, I would never in a million years suggest that in general I knew better than they do about all children. Like I said, their very brief advice for dd (anxious but straightforward, no masking at all and is happy to talk to anyone) was spot on, we followed it and five months on we can honestly say that things have turned around for her.
For ds2 though, he is complex, but in an appointment situation he looks like any other child, he looks straightforward. If I had £1 for every time people have met him and assured me he's fine when he's not, I'd probably be able to afford a holiday!

I know they have a genuine wish to help, but when they see a normal child, looking happy and relaxed, appearing to engage fine, it is so at odds with what Dh and I have told them that they can't get their heads around it, no-one can. I believe this is what makes them think we are liars, before we had Ds, dh and I would probably have the same opinion!

So they want to help this child, and in order to do that, they need to sort out these dreadful parents who are telling them awful things about this child who is clearly fine. How will they do that? Encourage us to treat him like the normal child he is, encourage us to shift our relationship methods with him to stop us from seeing him as a "problem" child when he is obviously (to them) not.

I can see exactly why this is happening, and I'm certain they have our best interests at heart, but when their view of us is so much at odds with our reality, and they won't believe what Dh and I have told them, it puts us in a worrying situation, worrying for Ds (as he can't access support) and worrying for us (as we are wide open for accusations of all sorts).

We have filmed and voice recorded evidence, but they won't look at it or listen. I've taken in a folder full of notes Ds has written about wishing he was dead, drawings of him dead, drawings of him killing himself, but it's all dismissed as silly boy nonsense. Notes by the way that had my hard-as-nails neighbour in tears.

I entered into our "relationship" with CAMHS fully trusting them, knowing that we were in safe hands, relieved that our worries were at last being taken seriously, and ended up so disappointed and scared by the whole experience.

Had I seen them only for dd, I would be here saying that CAMHS were wonderful, but for ds2 they've believed the version of the boy they can see, even when it has been explained over and over again how well he masks.

I also find the suggestion that a dx is only an opinion worrying. A diagnosis of autism is not easy to come by, not something that any team of diagnosing professionals takes lightly. Suggesting it is only an opinion says to me that it is common for a diagnosis to be ignored (please tell me this isn't the case!). Our son's diagnosis has been utterly ignored, so perhaps it is the normal CAMHS view? Which is gutting, as we naively felt that his dx meant we no longer had to prove his difficulties.

I have completely lost my trust in CAMHS following their involvement for ds2.

Over the last few years, we have had to be very open minded to work out what was going on with ds2, how to help him etc. It always seems to be the case that we have to be open minded about accepting others' views, even though we know, from extensive experience and beyond shadow of a doubt, that we now know what is going on and how best to handle things day to day.
Why is no-one ever open minded enough to take in what we (and others like us) are desperately trying to say? Why are we, the people who live with our children, always wrong and have to have our experiences dismissed in favour of people who don't know him?

And if I sound defensive, too right I do! How would you feel knowing something as fact and it being twisted and turned into something else and being powerless to do anything about it? (parallels with gaslighting?). It seems the only way we can prove anything (in school and for CAMHS) is to stop using the strategies (that keep Ds calmer and us sane ) and allow him to spiral into a breakdown (or at worst a suicide attempt) so others can see it, but we're good parents, we will do everything in our power to keep Ds safe and progressing.

Sorry, another very long post!

Really. If they were prepared to work flexibly there could be a more flexible service. You'll be telling me next that senior CAMHS management has no part in shaping the service: have taken nothing from their experiences of being a practitioner.

Yr 100% correct...they are shit...due to being massively under staffed..not interested unless child is suicidal....in my experience that is😳

if they were prepared to work flexibly there could be a more flexible service.

I'm sorry but this is utter nonsense. Do you honestly believe that Commissioners and NHS bosses give a toss about what hours front line professionals want to work?

Yes Yorksha I do. Where I live there is now 8am-8pm access. The resistance came from CAMHS. It was driven by the CCG.

OhtheRoses, that's exactly my point! CAMHS weren't happy about it but the Commissioners wanted an out of hours service and were prepared to fund it so they went ahead. And rightly so. Our Commissioners have categorically stated that they aren't willing to fund an out of hours service so we don't have one but another CAMHS team a 40 minute drive away have 24hr provision. It is indeed a postcode lottery, that's part of the problem.

PhilPhilConners Re the SIs of an ASD child, one of the school teachers put it ever so simply to me, ASD children see things quite literally, when they're overly stressed / anxious / etc they see death as transient not permanent hence the fascination and the wish to die in their eyes, is actually just sleep for a little bit until the bad stuff is all over.

Keep going. Your amazing parents.

Anonquestion Do save up for DK if you can. She was amazing with my DS and I say that as someone who's DS she couldn't dx! She did write a brilliant report though and she pointed out discrepancies in previous reports, like why was one lady advising me on proprieception strategies if they believed there were no sensory issues

Nobody has said all camhs workers are crap from what I can see, the last one we had was the most helpful. She wasn't so easily brushed off by the 'but hes fine for us' line by the school and was the first one to actually get everyone in a big meeting to help. People were too busy/had to keep excusing themselves from CAF meetings.

CAMHS have been relatively good, I suppose. However, DD is only 5 and not in a crisis. Fortunately, I have no idea what they're like in that situation.

snowgirl29 How long did it take you to get an appointment with Daphne Keen, if you don't mind me asking? Does she have a big waiting list? Thanks :)

In this area Camhs won't deal with any child with a learning disability, unless it is very mild. They say they don't have the resources to do any therapeutic work with children with adhd and learning disabilities. They will prescribe anti psychotics for children like this, but no actual help regarding behaviour, etc.

The learning disability nursing team are supposed to do the therapeutic work, but if a child's behaviour isn't amenable to the normal sort of strategies, then the children get left on a waiting list for a non existent service of support for severely challenging behaviour. There is approximately 1 LD nurse for every 60 000 people in the local authority.

Waiting list for asd assessment by Camhs is heading towards 4 years, although I do think that is being addressed. Even if you get a diagnosis they won't do anything further regarding support.

Anon my dd saw DK we waited about four months however that was from getting a appointment. It took about six weeks to get her secretary to respond to messages so you need to email and ring a lot.