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?

AnonQuestion not very long at all! I was warned I'd have a very long wait, but I think it was 3 months from initial email to the actual appointment as she was adding an extra day to her clinic. She's amazing. Very much bloody better than his current paed good with DS and knows her stuff. She's a neurodevelopmental consultant and she was worth every penny. Assessment took two hours all in all then report followed. She's a registered NHS Dr with a private clinic so arsey difficult professionals involved in your DCs care cant just dismiss her findings.
Do be patient though. Her PA is extremely busy with all the referrals they get. So it might take a short while for an inital reply but they will get round to you eventually.

I am not sure why a very expensive private professional is being advertised on this thread? Seems inappropriate to me.

Probably stillloving because what is available through CAMS is unfit for purpose and parents are desperate to get help for their children.

stilllovingmysleep if you think something is being advertised. Do feel free to report it via the normal channel. I'm sure MNHQ will be sure to determine what they deem appropriate.

Firstly, it wasn't being advertised. People were responding to a question being asked. Secondly, she's actually not 'very expensive' at all. She's based in London and the private consultant where I am from actually charges 3x as much as DK does.

I also think it's very inappropriate for people to be insinuating that ASD isn't a neurological disorder but here we are and you're all entitled to your opinions too. Even Experts get it wrong sometimes too you know.

Just going to skip over that unprofessional passive aggressive comment still. I said 'insinuated' and several people on this thread asked you to clarify what you meant by scientific findings being up for debate

you also need to see that painting camhs with such a broad negative brush is very offensive and unfair

Ah. Did you miss the post where I said the last camhs worker we had was amazing then? Or the several other posters who have repeatedly said that they KNOW that not ALL CAMHS workers are like that.

I'm not going to get into a huge debate with you and hijack the OPs thread any further.

OP. I wish you all the best and hope you get the help you need for your DD

stilloving, you need to learn the difference between making recommendations and advertising. You will see people recommending products and services all over this site, clearly they aren't advertising them.

To be fair I think that everyone here knows #notallCAMHS are dreadful and #notallCAMHSworkers are useless but I posted originally to see if anyone else had had a really bad experience with the service and unsurprisingly many of the respondants have. I think that as it's a parenting forum it's one of the very few places where people can vent about CAMHS. It's such a taboo subject - this isn't even my usual account, as I don't want people to know about the parenting classes, the stress my family is under, the behaviour of my DD. Nobody here has named names or anything like that. To be fair I find it pretty distasteful that a CAMHS worker is spending so much time arguing / debating with parents who are clearly distressed and angry about the shit service their kids have had on an anonymous internet forum... I wouldn't dream of going onto similar page in my capacity as a professional and debating with parents! I am very grateful, however, for the CAMHS workers who have explained how overstretched they are, but I do not see the point in arguing over semantics. Fwiw I am aware that Daphne Keen is not the only person in the UK who can diagnose ASD but I am taking the recommendations in good faith. Hope this makes sense!

Indeeed August it even me that advertised DK in the first place. Someone else linked to her upthread.

I think many health professionals need reminding that they are in post to deliver and try to facilitate a service - they are not judge and jury.
Many patients are held in disciplines and are diagnosed inappropriately, as health professionals cannot summount their ego to admit that the patient before them exceeds their expertise.

This masks the great problem of underfunding, as until we have honesty and trust between the health profession and care receiver, we cannot work together to put political pressure on the powers that be to fund adequately.
I speak from both camps as a caregiver and someone who has been and is still going through the emotional trauma of our system. As a parent I have learned that in order to communicate effectively within the system I have needed to be calm, offer respect to the care provider (even when I am upset) and be fully aware of guidance and policies relating to the condition/care provider.
It is only when you can follow the same "rules" that you can negotiate the system. Being too emotional is traumatic and ineffective for all concerned and doesn't usually end with a mutually beneficial outcome.
My heart goes out to all going through "the system" CAMHS or other.

Well said Anon.

Well said Anon and FrancieC23

Yes, well said. DK gets mentioned a lot on the SN boards and AFAIK no posts have ever been deleted for advertising.

Provision is patchy and ASD is complex. It is bound to be impossible to find practitioners across the country who have the skills and experience to make a dx in atypical cases.

And £400? Honestly, that's a drop in the ocean compared to what I've spent on my DS to get him the support he needs which isn't available on the NHS.

Thanks snow x

It is very sad that there is not enough provision on the NHS and I fully take that point. God knows I am aware of that both through my work and also through the experiences of colleagues. Our particular clinic has an excellent and well qualified neurodevelopmental team but I am aware not all teams have the same. It is indeed a crazy postcode lottery, largely because of funding cuts.

We went privately for a diagnosis, to see a paed and psych who have experience with PDA and with children who mask.
We were let down by the CDC too and have been encouraged to complain (but don't have the energy). Ds passed the threshold for ASD, but because the NHS psychologist left vital information out of his report, they ignored the medical (ADOS and DISCO) evidence in favour of a vote of "nope, we can't see it."

There is such a lack of knowledge about masking which leaves us open to judgements, which has been seen clearly in his thread.

I don't personally know anyone who would ask for help then deliberately be obstructive to that help.
To the CAMHS professionals on this thread, I hope reading all these comments will help you to open your mind to the fact that win autism, you may not be able to clearly see it, it's highly unlikely that parents are going to ask for help then lie through their teeth.
Going by the experiences of people I personally know, which have been uncannily similar to mine - masking child, no, no problem here - proves to me that many CAMHS professionals are getting it wrong, but are set in the mo set that they are the ones with experience, so they are the only ones entitled to make a judgement. When this judgement damages families, it doesn't seem to matter, they don't have to progress with their knowledge of autism.

If you want to learn about masking, the NAS has a page about it, if you ring the NAS helpline, the volunteers tend to know all about it.
Dr Luke Beardon (autism lecturer) has an excellent blog which covers masking which is highly worth reading.

I was told by a SENCO friend that none of her training covered masking at all. I have completed a course about understanding ASD, no mention of masking.
ASD knowledge in the NHS is sadly often lacking.

Still loving thanks to the sen board my dd was diagnosed by DK a whole 13 months earlier than the NHS. At the time of her private dx with DK she had already been n the NHS pathway for 16 months so in total two and a half years on NHS pathway. That early dx was invaluable to my dd and the support she received.

IME over the last 5 years, the professionals that help the most are the ones who accept that parents know their children well, and don't assume we're lying to cover up crap parenting.

Too many assume they know the child inside out on the back of brief observations, and until you've experienced it, you have no idea how demoralising and frustrating it is.

PhilPhilConners I understand completely. There is no information on masking which is very common in HFA children. The lovely last camhs lady we had, asked me to drop the report in for her to read ahead of the big meeting she had arranged (about six pages all in all) I gave it to a colleague of hers who's comment was "God that's an awful lot to read".

The strange thing is phil that once my DS was in a different school. He immediately relaxed and behaved how he would at home and out and about. That much so I had the new senco begging me to get his comm paed into the next meeting.

Don't blame CAMH - they're doing the best they can with the limited budget and resources they have - thank our lovely Tory government for chronic underfunding to mental health services.

I don't think its within CAMH remit or sklillset to diagnose ASD. That should have been pushed for through the school's SEN framework, or by yourselves via a GP referral to a specialist.

t4, yes the government must take some responsibility here, but as many of us have pointed out, camhs are not faultless in this either.
They can be amazing, but with other children they can be dreadful.
We had a good experience with dd, distressing and awful with ds, both with the same therapist.

And in some areas it is camhs who carry out assessments and diagnosis, in which case you'd bloody hope they did have the skills!

Our camhs don't diagnose, but as mental health problems tend to go hand in hand with HFA you'd think they'd have more knowledge about it at their hands than they currently do.

Well said philphil, at the start of this awfulness I was so shocked that CAMHS starting point was that they didn't believe us. In what other scenario would this happen, where the assumption is you as parents are lying?

I feel that my interactions with CAMHS last week have been typical - DD hysterical and really distressed, spoke to our worker last Weds who said she would try and get assessment done sooner, she said she would ring me back in the afternoon. She didn't. On Thursday I rang and was told she was on the phone, she would ring me back as soon as she was finished. She didn't I rang later and she was in a meeting. She would ring me before 5. At 5 to 5 I called a 3rd time and it went to out of hours answerphone message 'please ring GP or NHS111 in an emergency' I rang on Friday and she was off sick. I rang yesterday and she was supposed to call me back, and she still hasn't. It is so infuriating!