CAMHS' experiences

[inappropriatelyemployed]

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.

Oh I see, thanks.

Hi there, my DS1 (Aspergers and ADHD) started the process of getting a diagnosis when he was about 9. We saw the triage pretty quickly which told us that he had suspected ADHD and AS. From there, it took us another 2 years of assessment interviews with a CAMHS nurse (I think) to give us the ADHD diagnosis. Only then did he get referred to the ADHD clinic, where we eventually got an appmt, he was prescribed Concerta.

The AS was a further year after that. We received an appointment at a complex communications disorders clinic and were assessed by the psychiatrists. They then proceeded to forget about us so we didn't hear back from them until nearly a year later when they sent us a report to state that he had been diagnosed with AS. The psychiatrist made a visit to school, ensured that they were treating him right, and has now signed him off.

During this whole process (which has taken 4 years), we have received letters for appointment times that have passed, reports that have DS' name and age wrong, our family details wrong. DS1's school has been asked numerous times to fill in questionnaires about his behaviour. The ADHD clinic only asks to see him once a year - even though he is on quite strong medication. There has been no follow-up to make sure that he is ok with taking it on a consistent basis. Really, they could have done everything that they have done with DS straight after the triage session and the outcome would have been no different. It would have saved so much time for both us and them.

Were it not for an amazing SENCO at DS' school, we would be totally lost. I don't feel that CAMHS were either helpful or prompt in assessing my son.

Selks I did not mean to be rude, I was just talking in a general way about my experiences, and that in a similar way to some other posters, there had been a signing off once diagnosis was made. I think it is assumed that schools will take up the slack

However a friend in the same borough who was having horrendous problems with her ASD child's anxiety did get re-referred very quickly after being discharged, and had a great deal of individual support at CAMHS itself. And she (despite a lot of family behaviour problems) did get supportive treatment from very people I had felt patronised by, so perhaps it was just a misunderstanding, or perhaps my son wasn't deemed to have serious problems.

I was also told by the FT that I could re-refer back to CAHMS very quickly now that I was in the system, so touchwood, I am glad I haven't had occasion to do this, obviously better that ds2 hasn't had serious problems despite his ASD.

Swan, I didn't think you were being rude, my response was to Oneineight, she had rightly pointed out that I was confused by her post and was explaining to me .

Selks - I don't find your long post out of place at all. It pretty much explains the problems we've had, particularly when we were first going through DS1's ADHD diagnosis. This was 4 years ago, now and we suffered endless delays which were down to staff levels and staff sickness, which seemed to be pretty frequent and understandable, to be honest, as the whole service seemed to be pretty creaky.

Once we got through the screening process, DS1's psychiatrist has been pretty good and very willing to listen and discuss and, as for OnInEight, flexible and cautious about introducing treatments. We see him every 3 months or so and he has been very supportive in our attempts to get DS1 into a specialist educational setting. Our frustrations have been dealing with admin - there seems to be a high staff turnover and frequently messages don't get passed on, appointments don't get sent out, our arrival at the centre didn't get announced to our psych, once.

DS2 is still under the community paediatrician, as he "only" has ASD, but not ADHD and ASD is still dealt with by services outside of CAMHS in our area. She's under pressure to get him off her books and passed onto CAMHS, but I know they'd be forced to sign him off their services, as he doesn't lurch from crisis to crisis, like his brother does, and then we'd be left with no support at all for him.

Mass immigration isn't a problem, here, btw. Our area is 98% English WASP.

Ds 9 (ASD) and was referred to CAMHS by the paed and OT due to anxiety and self harming.

He was assessed but because he hurts himself in frustration rather than to hurt himself he didn't meet the criteria and was discharged.

He has very low self esteem and mood and I think it is a crying shame that there isn't any support for MH problems in children until it reaches crisis point. It seems were ASD is the primary cause there is even less help for mh problems.

Marking my place so I can add in the morning. Would be very cathartic.

TheyCallMe! My ds has ASD and OCD and self harm/punishment issues. You're right, there's little help, real, effective help, available.

On a different note, as I said up thread, I'm seeing CAMHS Psychiatrist with poorly ds this Thursday. What should I bee asking for? A PSYCHOTHERAPIST/Counselling/PSYCHOLOGIST referral? I can't just keep spooning in the Prozac when he's 13 and only capable of 4 hrs school a day (mostly spent in the quiet room). Remember, this was the 4 yr old diagnosed with "mild" autism in 2005. Also, the very bright 7 yr old who "doesn't need one-to-one" and the 8 yr old who "definitely won't benefit from a Statement"

Ooh, sorry all! Went a little power crazy with the emoticons there!

Eliza could you ask for a referral to the specialist OCD team at the Michael Rutter Centre at the Maudsley in London?
They are a national centre of excellence and will see young people from anywhere in the country with severe treatment resistant OCD. It sounds as if your ds fits that category.
I think you are quite a way from London but they have various outreach protocols as well.
Treatment from them was the only thing that made any difference to my Ds.

Not Psychotherapy, Eliza. I don't think it's routinely offered on the NHS in this country, anyhow, but they'd be most likely to blame all his problems on you and offer no real help.

CBT is the therapy of choice, at the moment. It requires a level of self awareness not always present in people with ASD but, put briefly, laudably aims to re-model how the person having the therapy perceives and reacts to situations.

I like NHMW's suggestion, though. It's not like your DS has spent his whole life perfectly fine, so it's reasonable to ask for a referral to someone/somewhere who knows what they're doing.

CBT is an essential part of what the Maudsley offer but they have the expertise to adapt it to the young person and their difficulties.
The actual techniques aren't rocket science but as often with MH problems it is the ability and approach of the professional involved that makes the difference.

O Gosh where I live OTs more useless than CAMHS and that's saying something!

Thanks for the advice. Thing is, we live in the North. However, I will be asking the question on Thursday. I've about had it!

Pipinjo - hi!

That is a very interesting post: is there really so little training on autism in the NHS, it is a scandal. What about Clinical Psychs or even Ed Psychs I wonder?

Have you seen the Facebook ABA4all campaign, you should post this on there!

PipinJo I was about to say something similar but you've beaten me to it. I've never understood why the accepted path to ASD and ADHD diagnosis is through a mental health service, when these conditions are neither. True, there may be mh comorbidities and it would be appropriate for CAMHS to treat these, but it doesn't make sense that for many people this department is the first port of call for diagnostic assessment, given that (by their own admission) they are not experts in them.

I don't even work in the field but I still found that I knew a lot more in some respects than the 'professionals' who were meant to be advising and supporting.

It's no wonder that so many children wait years for correct diagnosis and suffer consequent harm from not having their needs met. This situation with CAMHS is at the root of the problem.

Great posts guys thanks. This will be really useful stuff.

Eliza how did you get on today? If you want to say.

Aww! You remembered NoHaudin!

I'm feeling more optimistic. Psychiatrist has arranged some more counselling but just to talk about anxieties rather than CBT itself. He has increased the Prozac as ds is on a weeny does and has has had a growth spurt, recently. He will see him in 6 weeks and if there's no noticeable improvement, he will consider adding Chlomipramine (will need to read up on that) and a referral to a psychologist. Also, he will consult with an autism specialist colleague, though we agreed, DS's big problem is the OCD. The ASD is. "Doable" but the co-morbid OCD has floored him and crippled his education.

Have the school meeting at 9am tomorrow to see what they come up with. At the moment ds is only doing 4 hr days.

Thanks for the support!

Glad you have a plan and a reasonably early review.

Like you I feel we could manage Ds's AS but the OCD has an enormous impact on every aspect of his life.

Good luck for the school meeting. Ds missed almost all of yr 8 and half of yr9 to OCD but still managed pretty good GCSEs so it is possible.

inappropriatlyunemployed- I think it might be helpful if the system had more faith in the private diagnosis as long as it had been done by a chartered psychologist. I think some people would be willing and are lucky to be able to afford it, but worry (rightly or wrongly) that the diagnosis will not be acknowledge/recognised. If these diagnosis where unquestionably recognised, it would free up some time/space on the NHS- I know it is not fair (neither for the people who can't afford it or the people who have to pay when it could be free) but I think a lot of people are in a desperate situation, and the NHS system seems broken. What do you think?

What I've found frustrating is the opacity of the system as well as the lack of communication/fragmentation of services. DS got referred via CAMHS to a paediatrician and OT. The OT and the paed are in the disabled children's centre which (I think) has nothing to do with CAMHS. Both have acknowledged he has significant difficulties but he's been discharged because they say there's nothing they can do. Which is utter bullshit. He has since had a (private) diagnosis of dyspraxia and SPD.

Because of the lack of help and support he received, he ended up threatening suicide and self-harming just before Xmas and got referred back to CAMHS again (because I refused to leave the GP's surgery until he'd referred him) and amazingly, he has got an appt next week - around 3 months since I saw the GP.

DS is not yet 7 and was almost in tears when I told him he was going to see someone who was going to help 'his mind being unkind' (his words). He shouldn't have to have got to that point before he got help.

It seems to me that if CAMHS took a more holistic approach and acknowledged that disability quite often has MH implications that children wouldn't have to suffer before they got help.

I have also found it very confusing and still don't understand how the services all fit together and who's actually in charge. Also, the lack of communication between the various services means that painfully squeezed services are being wasted. The paed DS saw hadn't even read the OT's assessment nor had they had a conversation about him, even though they work in the same building! I think that's shameful.

Sorry, that's a bit garbled but I hope it's helpful