CHAMS - everyone's general experiences and why positive or negative

[raspberryroop]

I think I have had a positive experience today as they are going to write to my sons sw to say we need urgent respite and have refereed us for some family therapy.

Will have to see the letter and see how long the counselling takes to arrange before I make a real conclusion.

I am however very interested in peoples experiences after talking to different people and some things mentioned on recent threads.

Our local CAMHS have very limited resources and offer very little in the way of post-diagnosis support. Their usual process is to refer responsibility on to schools and/or other agencies to provide anything they don't provide themselves (which is pretty much anything).

The problem here is that they don't really understand how those other agencies work. They think that if they recommend a child be 'given a statement' then that will automatically happen, and that if families 'engage with the Autism Outreach team' (or similar service) then all manner of wonderful support will be provided. They have little awareness of these agencies' limited budgets and remits - they believe that codes of practice and Government guidelines work to the letter and if they don't then the parents aren't pushing hard enough or asking the right questions.

I'm pleased that your team has supported you and seem to be on your side, but realistically they may not be able to influence the sw to do anything. You're right to be cautious - I personally wouldn't be confident of anything practical happening until I was holding the appointment letter in my hand, and even then I'm not sure I wouldn't be expecting a phone call to cancel.

Sorry, not what you want to hear, but it does reflect my own experience.

Ds sees the top psych at CAMHS and I have found him to be very understanding and he has been happy to work with school and myself in order for him to enable ds to communicate.

We were offered an a course of CBT delivered by a SW there. We went to the introduction, she was hopeless, she had a very basic grasp of autism managing strategies which might be ok for parents of newly diagnosed children but we're 13 years down the line and it was no use whatsoever.

She honestly thought that telling me about warnings and timetables etc etc would be a revelation and couldn't wait to tell me how other parents had made a real difference using them.

Like streaky I don't think they have much grasp of real life to be honest and other outside agencies either. The psych wrote supporting my choice of school and thought that would swing the LEA but in fact a solicitor and a barrister were the only people who would move the LEA.

For me the psych's a nice bloke and he's handy to have on board if ever ds needs (or rather agrees to take) meds but do I think their input will be useful or make a difference? no.

Ours are ineffectual.

I like both the psychologist and the SALT they have based there and both are knowledgeable but neither have the time or resources to do anything. When ds' phobias were out of control they agreed to come to us for appointments but didn't really do much more than write letters describing his problems. The psychologist suggested we look at getting some intensive behavioural support, far more than they could offer, so I suppose she did us a favour there rather than stringing us along waiting for interventions that would never materialise.

I did ask them for advice about something to help ds develop some sot of emotional regulation - our ABA people said that would usually be within the remit of CAMHS - but they said they couldn't help and it was an OT issue. OT won't see ds because last year he had a delay of less than two years.

streakybacon - Thanks not really expecting positive experiences as have been let down enough by SS, LEA and Health services over the years.

I do agree that the letter is not a passport to anything - just hoping that along with school welfare, our private Councillor and the mental heath team it will be enough to persuade SS that we do need some practical intervention and respite !

The borough next door are amazing - can't praise them enough for what they did for my sister. They are bang up to date and do a lot of good work - I've seen the results with friends kids. Always good things.

My borough are so incompetent it's dangerous- to the point where I've now refused to allow my son to have anything further to do with my son. We see an independent charity right now and when that's finished I'll pay to go private (out of borough lol!) or DS will do without until I can move house.

Choosing to deal with our cahms is like choosing to wear the yellow star and get on the train, if your family isn't wrecked before they get involved it will be when they've finished with you (& probably by someone who hasn't even met your child!)

The adult service is the subject of one of those "independent review" thingummies right now after a couple of recent deaths, hopefully some of the lessons learnt stuff will eventually feed into the childrn's service.

I suppose I'm trying to say that cahms is REALLY a postcode lottery like no other I've seen in the public services.

CAMHS Service here has been poor on the whole. When DS then 10 was referred with ready quite pronounced OCD their intervention was pretty useless but they did identify that he might be ASD and we got dx much more quickly from the paed than we would otherwise (if at all). They have nearly all been nice people but ineffective/inefficient. DS deteriorated until the point at 13 when he was barely functioning at all when he was referred to inpatient unit in London. (And we still had to push for that). Having cost the PCT who knows how much for 8month inpatient stay in London and input from national specialst OCD clinic, we now have better service, mainly a really good psychologist. CAMHS did refer us to SS which meant that they took us on when they otherwise might not, but what help you get depends on SS. Family therapy was a complete disaster. I wouldn't touch it with a bargepole at our CAMHS now, but I do think it depends largely on the therapist and you might strike lucky. I can see how with a good therapist it might be useful.

Ours have been good. It did take us a while to find a therapist who had the experience to deal with dd's particular set of problems, but we were never made to feel bad or uncomfortable in the process and felt it was ok to explain our needs. They also have an excellent community scheme with SS, which we have found helpful.

Ours wasn't bad, but it wasn't great, either. We were referred for psychotherapy for my DS (7) who has AS. We waited around 4 months to be seen, which isn't bad going in this area (I rang and hassled them constantly, though (). They offered an hour a week for six months initially, but I felt there was no real benefit at the end of the six months. It was taking him out of school for half a day a week and I just felt it wasn't worth the disruption. There was a lot of talking about his feelings, and the problem is, he is very bright and can talk until the cows come home about how he should behave, but in practice, he cannot control his emotions at all, and CAMHS were just not up to helping with this aspect of his behaviour in my experience. The psych was a nice guy, but I feel my DS needs something much more intensive than that (major anger issues) and they couldnt offer us anything on that score, so after the six months, when we were offered a further 6 months, we declined. I am trying to find an alternative, but it looks like we are going to have to pay for it.

Note2self - my DS13 has had private counselling for ages - cost me my kitchen fund ;( but must say I think it has been fairly useless - he is also very bright and can talk about himself ad infinitum without real results. I am not investigating CBT and hypnotherapy - more for practical stress and impulse control than ''emotional change''

I haven't been very impressed with CAHMS in my area!

DS was diagnosed with ADHD in July and was basically given the diagnosis and was given a list of Parenting COurses to go on!

Ours seemed nice enough but after a few visits the closest she came to giving advice was suggesting I put DD on the naughty step if she bites me during a meltdown!! I've not been in touch with her since then surprisingly.

I am sad to have to name & shame East Sussex CAMHS as AWFUL & USELESS! The psychiatrist imo needs her own head testing & probably shouldn't be anywhere near children due to her weird need to imply something sexual to the most innocent of behaviour.

Am also under East Sussex CAMHS and also under a female psychiatrist for my son's issues - presumably the same one, as I think there is only one. She has been good for us and is the first person who was able to diagnose my son and prescribe medication and therapy to help him. We are very grateful to her. However, we have dealt with a really mixed bag of people at CAMHS in the past and their help for DS was limited. I felt as if some of the professionals thought my DH and I were just neurotic parents and that there was nothing wrong with our son. Whilst we were busy negotiating the system, DS was suffering needlessly and it wasn't until he had a major crisis and I pushed, yet again, for another opinion that he finally received the help he'd needed all along. If I hadn't fought for him to receive help, he probably wouldn't even be attending school now.

CAMHS is definitely a postcode lottery.

Have to agree with Bochead about the family being wrecked by the experience of some CAMHS teams.

CAMHS in Chelmsford appeared to just want to blame and divide our family however inappropriate it was and we never received any apology for this.

We arrived very stressed but united and we welcomed the idea of help but left without any support or help and with our family destroyed for ever. A year on I still have nightmares about the lies and accusations and really dont think I will ever have trust in any so called professionals again.

The tragedy is that I think it could happen to other families too as nothing will change as it is one area of the NHS where I am sure people will not complain so no one will ever know.

We are only on the start of our journey with CAMHS so interested in these accounts, it's useful to have knowledge of how they don't work as much as it is about how they do or are meant to.

Toffeefudgecake, the psychiatrists we saw was PS. IMO she should be kept away from kids. What normal adult tries to sexualise behaviour that is in no way sexually related at all? Someone looking for cheap kicks out of anything & who most probably needs to be on the sex offenders register I think. It's not normal.

Yes, that's the psychiatrist we saw too, Sparkle. Sorry you didn't find her helpful. Obviously, I don't know what happened in your case, but she has been really helpful to us. It was the psychologists who didn't help, in my experience. They were nice enough, but didn't seem to think DS warranted any kind of diagnosis, which meant we just kept muddling through, with DS having all sorts of crises and suffering unnecessarily. He was first seen by CAMHS at age five and wasn't diagnosed till he was 11. In the meantime, it had been suggested that I was trying to 'medicalise' him by seeking a diagnosis, or that we were anxious parents projecting our anxieties onto him. Finally, after he was unable to attend school at all thanks to his extreme anxieties, I insisted on a third professional opinion and saw PS. She diagnosed him and prescribed medication, which has enabled him to attend school for the first time in eight months. He is also receiving appropriate CBT treatment and, thanks to the diagnosis, the school is being really helpful.

I think you have to go into CAMHS with a thick skin and determined to keep pushing for what you feel your child needs. There are often tears along the way, I'm afraid.

Sparkle - you could ask for a second opinion, you know?

Sounds like you had the same sort of experience as I did Toffeefudgecake. 6 years to wait for a diagnosis & constant fobbing off while the child suffers is unacceptable. Hence im now moving area to somewhere they seem to be a bit more pro active, regardless as to if the child actually has a diagnosis or not.

Who would you suggest I get a second opinion from? It is only CAMHS that can officially diagnose.

I'll PM you, Sparkle.

:)

Camhs here...............very nice...............very smiley.................very noddy..............very crafty. One used to be lovely but has moved on. The rest that are left do all talk but no action. Oh and PILES of paper.

They seem to think that ds............poss AS/ASD/APD, def SPD, motor and vocal tics. Extreme anxiety attacks, anger, communication and social skills out the window. Just needs his hair cut oh and the great implementation of a few social stories

The only sensible and honest thing that was said to me was that do I realise that once an actual dx is made they will wave us goodbye as they have no skills or therapies to take us any further and the ruling is they dont treat.

I wanted to answer with a hell yes it shows.

Can anyone confirm so do CAMHS just do diagnosis? What happens after that then?
Also is there a way to assess what the quality of your local CAMHS is? assessment reports? I am v nervous about accessing CAMHS 'cos of the horror stories.

OMG, I've just been referred to CAMHS and now I'm scared.

I replied up thread (before christmas NC) and have nothing but praise for the nurse we saw twice!

It's obvious the service is stretched to the limits, but she was thorough, caring and very empathetic.

Even though it was our initial assessment, she has spoken to the SENCO at school for us and asked her to support us, despite not having the formal dx yet.

She gave us an extra appt as the initial hour wasn't enough, and we received a write-up in the post of the 1st session before we attended the 2nd one.

A lovely woman who made us feel totally at ease and has boosted our confidence as parents 10times over!

I was genuinely upset when she said she would probably never see us again, as her job is to make the initial assessments only

Ours were great too, we saw 2 MH nurses and a psychiatrist, they were all really helpful and supported us through the process of Dx'ing our Dd3.

They were the first proffs who had taken us seriously.

Sadly though, they did discharge Dd3 as soon as she had been dx'ed, we got one more session with the MH nurse who talked us through the implications of the Dx, then said we were doing really well with Dd3 and that her school could now take over.
I was disappionted because I really liked the m h nurse and found him really easy to talk to, so did DP and it is unusual for him to talk to anyone.

They said that they only continue to see children with mental health issues and that ASD on its own is not one, even though they are aware that it can lead to m h issues due to anxiety. They did say if we were ever concerned about Dd3's m h we could go to our GP and get re referred.

FWIW, I think it varies so much from place to place that you probably need to gauge for yourself from your first appointment what your CAMHS is like.

Good luck.