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?

It depends. I would say they were both connected if it wasn't for them choosing to keep on referring to these courses. Wouldn't part of the budget by the council / LA / CAMHS be better spent employing more workers to help cope with the extra caseload.

We were assigned a very helpful CAMHs lady last time, on account of the way my DSs case was handled we were an emergency referral and the only one available asap was from someone from outside of our area. Oddly enough, she was more helpful than anyone else locally had been. That's what people mean about postcode lottery. It is a thing.

"No diagnosis will help improve relationships / set behaviours in a family on its own"

See, I think this is possibly the fundamental reason why our CAMHS experiences went so wrong.

Our therapist couldn't grasp at all the fact that we have very good relationships with our children. We are very aware of their difficulties, their triggers, their strong points, and we work hard with them to help them reach their potential. We already went through years of strict parenting, which didn't work, so we found methods that worked.
All of our "care" was based around the fact that Dh and I didn't have a clue how to be parents. Because ds2 (and prob ds1) has PDA, the strategies that work are different, but in line with recommendations from the PDA society, the book The Explosive Child and similar to other parents going through the same thing, but because this didn't fit the standard mould of parenting, we were being wrong and obstructive, even though the parenting course was making things much, much worse (we stopped after we got to the point where Ds was attacking us, the course leaders offered no advice except to tell us to keep going).

Our reasons for going was worry about ds's suicidal threats, which happen when things get more tricky at school, where he masks like a pro. But in our therapist's eyes, masking doesn't exist, and because he was exploding at home, it means that the problem lies at home. We had no chance of being understood at all, because the facts were completely ignored.

CAMHS had their own agenda and twisted our words to meet their agenda, then presented that as fact.

We are lucky in a way because we know how to calm the situation, but taking Ds out of school every time it all gets too much is frowned on by school, but when they refuse to acknowledge his diagnosis and actually do something to support him, we have no choice.

We are also lucky that our wonderful GP understands the situation and has our backs. I've no idea where we'd be know without her.

CAMHS may be underfunded, but our problem wasn't so much accessing services, but dealing with their dishonesty and rigid unhelpful views, expecting all children to fit within their narrow criteria. The worry is though, if we ever need them again, if they continue in the same vein it may damage our family, and they are already calling us obstructive, for doing what we know is the best for our DC, because they want us to parent by the book, they want Ds to neatly and obviously fit in the manual (which he doesn't).

Thanks for the explanation Yorkshire
I had suspected as much was true... I tried to call after work at about 5 past 5 and the answerphone said 'in an emergency ring your GP out of hours service' I don't think that that would be very useful if your DC was suicidal over the weekend. I have read about the shortage of beds, kids being placed really far away.. it is heartbreaking. I certainly wouldn't want to work for CAMHS. I do think that where we are it is a combination of chronic underfunding PLUS some pretty useless staff - I wish someone had said that we'll be waiting for a really long time, that they believe us, instead of treating us like liars, that they would treat DD with some compassion...

We had exactly the same.... school report said she did not have ASD because she fits in at school (when she attends), never mind all the research stating how girls with ASD present differently to boys... because of this report we had to do parenting classes!

"No diagnosis will help improve relationships / set behaviours in a family on its own"

Why though Phil you think that holding such a view means one is 'blaming' the parents or implying that their parenting is sub-standard? (By the way I have a problem with the word 'parenting' anyway, as if it's a 'thing' we do rather than relationships we have). Do you really think it's unhelpful to think together and carefully about the context in which a child lives? God knows all our families have things that can be improved / thought about. As I said above, I say this as a parent and Camhs worker. It is a certain kind of parent who feels judged at ANY mention of family relationships which obviously are part of the puzzle. Many of us have perfectly warm and loving family relationships and yet aspects of what we do / feel may have an unwanted impact on other family members.

By the way I think the book 'explosive child' is really good.

We had exactly the same.... school report said she did not have ASD because she fits in at school (when she attends), never mind all the research stating how girls with ASD present differently to boys... because of this report we had to do parenting classes!

The other thing that's worth mentioning is that many children have some autistic characteristics but that does not mean that they would fulfill the criteria for an ASD diagnosis. Again the aim would be to work with the particular child / family and find out what can be improved and understood rather than focusing only on a diagnosis that may not come and certainly doesn't give the whole picture.

This is exactly what we have.... 'masking doesn't exist' so the problem obviously lies at home. It is so nightmarish to not be believed and to be accused of lying or at least exaggerating. The school do not believe us and think we are 'pushy parents'. Without a diagnosis we do not get support from the senco but the 'home school support worker' who is one of the most unpleasant people I've ever met. She is so vile, has insulted our family in meetings, lied to cams etc.

Yorksha, school won't refer him to Ed Psych because "CAHMS said it's a parenting issue"

This week alone he has told his teacher that he plays violent video games (he most certainly does not!), has been put on amber for "thinking out loud" and not stopping when asked to, and he has wet his undies at school and not sought help (not discovered until he got changed at home by which time he had a lovely case of pee rash). But no, because he smiles and gives out hugs and is chatty it's a parenting issue.

Allegra I'm really sorry they blamed you for not 'facilitating' the relationship with the father, that is so incredibly unfair

This is like what happened with us - our relationship with DD wasn't a bad relationship in the first place. We know her, we work with her etc. The treatment we received was also based around the fact that we didn't, that her meltdowns were because we were crap parents. In truth, it has put a massive strain on DH & I's relationship. I am currently on anti-anxiety medication because of the stress. Also DD now thinks we are useless as a family because of the family therapy we had to attend and because DH and I went to parenting classes. Yet they haven't assessed DD because her CAST score from the school was ok. It is just so so awful.

Anonquestion I am so sorry you have felt unhelped. However I need to stress that doing family therapy and/or parenting classes does not in anyway equal being a crap parent! No professional I know would think that, that is quite a jump on your part.

This is a really interesting thread and demonstrates the fundamentally different approach taken by CAMHS and Disabled Children's Services (where I live).

The paediatrician who assessed DS recently said that he expects DS to be diagnosed with Developmental Coordination Disorder and inattentive ADHD. He was diagnosed with dyspraxia privately a couple of years ago so this is no surprise.

These are neurological conditions that affect the way he interacts with the world. While a diagnosis doesn't help us manage his conditions any better, it does mean that I am able to put in place strategies that take account of things he finds difficult and adjust my expectations accordingly.

Conversely, CAMHS seems to root everything in the behaviourial and it's that aspect which makes it such a frustrating organisation to deal with as a parent.

I will give you an example. DS finds it extraordinarily difficult to sit still. He turns upside down on his chair, fiddles with things, chews his clothes and bangs his feet.

I know the best way of dealing with this is to give him frequent movement breaks, make sure that he has done some 'heavy' work before sitting for any period and cutting him a bit of slack in terms of my expectations.

The clinical nurse specialist we saw at CAMHS said she was very surprised his teacher didn't shout at him more for being fidgety and that he must be really annoying to have in class.

That's just one example (I have a lot more) but basically she said that all DS's issues were down to my lack of boundaries as a parent and that single mothers 'often' fall into the trap of becoming a child's friend rather than a parent.

How is that not going to get my back up? How is it remotely helpful to tell DS that he's basically being naughty? I should add here that DS was initially referred to CAMHS because of suicidal ideation. She said that he must have got the vocabulary from watching 18 films because no 6 year old would ever naturally express themselves in that way.

I did not feel helped, I felt judged. And "It is a certain kind of parent who feels judged at ANY mention of family relationships which obviously are part of the puzzle." just demonstrates to me the mindset at CAMHS.

The families that I often find harder to helpalthough often I do manage eventuallyhave very set ideas about what is wrong with their child & demand a particular diagnosis which they have decided on beforehand

This has become increasingly common over the last few years in my experience. For example, after that documentary about PDA aired on Channel 4 we were inundated with parents insisting that their child had it and if we didn't agree or suggested that maybe further assessment was needed to rule out other things then we were "shit" and "useless". Interestingly, we are now starting to get re-referrals from some of these parents saying that they went private to get a PDA diagnosis but now feel it was incorrect and would like CAMHS advice as to how to get the diagnosis "removed". CAMHS (in my area at least) also see huge numbers of children whose problems are very clearly the result of early trauma and attachment difficulties but the parents are adamant they have ADHD/ASD and are not willing or able to acknowledge the impact of early experiences (such as witnessing domestic violence) on their child's behaviour. It would be completely unethical and not in the child's best interest to dish out an ASD diagnosis to a child who does not meet the diagnostic criteria but this is what some parents expect us to do. Then you get the complete opposite, parents who are outraged when we tell them their child may have ASD because they don't feel their child fits the stereotypical (often completely inaccurate) presentation that they have seen in the media or because their neighbours kid has ASD and their child is nothing like him etc. so they refuse to engage with the assessment process and then blame us for failing to alleviate their child's difficulties.

The same if often true for interventions. CBT has been publicised a lot in recent years so a lot of families try to insist on receiving this intervention for problems that are actually far too complex for a CBT approach. Or the opposite,I recently asassessed an adolescent girl who had been told by her GP (after a ten minute consultation) that she needed Psychotherapy, for a straightforward first episode of anxiety and low mood triggered by exam related stress! I explained to parents that Psychotherapy is not clinically indicated for their daughters particular problem and that CBT is considered the most effective, evidence based therapy for what she is experiencing. Didn't matter, they continued to insist they wanted Psychotherapy and made a formal complaint, in which they stated that CAMHS had "refused to offer their child a service". We did not offer the service they had in mind but we were more than willing to offer a service.

There are several clear examples of poor practice on this thread, which is indefensible and simply should not be happening. However, in the interests of balance, it's important to note that a lot of families come to CAMHS intent on getting a particular diagnosis or intervention (often influenced by information from unreliable sources) and then declare that "CAMHS are shit" if practitioners express a clinical opinion that doesn't fit with what they had in mind. CAMHS has huge problems both nationally and in relation to the management of individual teams but there also needs to be more education (for other agencies and the general public) around what actually constitutes a diagnosable mental health problem.

As for your opinion (which you state as fact) that there are 'neurological conditions' leading to certain behaviour, first of all it is a massive area of discussion and by no means proven.

Are you saying that neurological disorders like ASD, ADHD and DCD are contested? That the DSM is up for debate?

Gosh.

Absolutely the DSM is up for debate as is every area of scientific inquiry. There is a lot of interesting and complex debate on these issues. The DSM also nowhere states that there are proven neurological conditions for many of the disorders it describes. Finally, the DSM is far from gospel and changes every few year to reflect the updated / prevalent views of the mental health community at the time.

Thus yes, I am absolutely saying there is lots of room for discussion / disagreement / dialogue. As I said: as in every field.

And I agree with everything that Yorkshapudding says.

The DSM is hugely controversial (amongst not only medics and clinicians but also mental health service users) for a number of reasons, particularly the most recent edition.

Stillloving please tell me you aren't a hcp , Asd is not a mental health condition it's neurological. In my area camhs won't work with or diagnos DC with Asd or ADHD unless they also have depression or anxiety simply because they are not mental health conditions.

I agree with Yorsha. The recent edition in particular has been criticised heavily, eg by the uk association or clinical psychologists but also by many many psychiatrists (of course also by psychotherapists / family therapists). And by many service users.

The one research does show more and more is the tight link between neurology and relationships. Ie our early relationships shape our neurology while at the same time each child of course has their own temperament too.

AndNow. I never commented on ASD nor did I say it's not a neurological condition. What I did say is that many children have autistic-like characteristics that do not fulfill the criteria of a diagnosis and in some cases may have causes other than neurology. Autistic characteristics do not equal an ASD diagnosis always. That is what I said very clearly and am repeating now but of course everyone can read anything they want in another person's words.

Still loving yes you did, you said ADHD and Asd very much fall into mental health field.

And you other post is very offensive are you suggesting that poor early relationships causes neurological conditions such as Asd? Are you aware such nonsense ideas were dispensed with many years ago?

Shouldn't the aim be to refer child with autistic characteristics to a Paeditrician to rule it out first though?

Not angry at money being wasted on parenting courses, angry at money being wasted on innappropriate parenting courses.