What’s your experience of CAMHS?

Many of our children have to be referred to CAMHS - The Child and Adolescent Mental Health Service - to help manage their behavioural difficulties or perhaps if they are experiencing a difficult period of depression or anxiety.

After a very difficult Year 8, largely due to an issue with a particular teacher about whom the less said the better, we found ourselves in this position with Son2, who has Asperger Syndrome. He was referred by his paediatrician at the end of last year.

The paediatrician, it later transpired, in the battery of blood tests ordered, had not included a Vitamin D test and so missed that part of his issues stemmed from a severe Vitamin D deficiency. This was only picked up by our forward-thinking GP, when Son2's legs began to cause him pain some weeks later.

So, we wait for the CAMHS appointment. And wait. And wait. Meantime, Son2 was finding it difficult to go to lessons and is on many occasions, unable to go to school at all, a stressful situation for the whole family.

Then eventually, an appointment arrives, SIX MONTHS after referral. My husband takes the day off and off we go. At the appointment is the paediatrician and a CAMHS psychologist who shall remain unnamed to save their blushes. Son2, predictably, refuses to speak to either of them.


We explain Son2's issues, as the paediatrician yawns through the whole appointment, then takes a phone call. At an appointment we have waited six months for. I studiously ignore him. The psychologist agrees to prescribe a trial of a particular medication and says she will call the school to speak to his counsellor there before we get it filled. However, to the best of my knowledge, she does not and we are left with an unfilled prescription a week later, still waiting to hear back from her. I call and leave a message. No response. So, I decide to get the prescription filled although Son2 will only agree to take it after I take him back to our GP who explains to him the effect it will have on him and that he will soon start to feel better, something, presumably, the psychologist should have taken the time to do.

Within a couple of weeks, indeed Son2 is feeling better and even manages to go to the local shop by himself for the first time in a year. But there is still no word from the psychologist and we are coming to the end of the bottle. I call the GP who agrees to prescribe a further bottle, even though this is supposed to be a monitored trial.

Off we go on holiday, where Son2 has a couple of relapses but is generally much better. When we return, there is still nothing from the psychologist, so I call my GP again to ask who should be monitoring Son2 as we have heard nothing, nor have we received a follow up appointment. She checks her screen and has a recent letter scanned in that says Son2 had been referred to the wrong county sector of CAMHS and had been re-referred to a different local region. They had not bothered to cc us in because, of course, as the child and his parents, we are the least important people in this process, it would seem.

I am incensed. And as David Banner used to say just before he turned into the Incredible Hulk - don't make me angry. You wouldn't like me when I'm angry.

I call the new department to find out what is happening and, to avoid my call going ignored again, I  pass on to the lady who takes my details that I am also co-chair of the local parent-carer forum and a response would be appreciated, as I am extremely unhappy at this rather careless administration when they are dealing with a vulnerable child who has been prescribed some serious medication.

An hour later, a lady calls me, very concerned that I shouldn't be complaining about them and I assure her that it's not them at fault, but the other CAMHS section. We now have an appointment for 25th September. So, because of this mistake in referral Son2 will have had three months with no monitoring for a child who was only put on an initial trial of an SSRI.

It doesn't bode well for the future for an integrated health, education and care plan if they can't even figure out where you should be referred. And at the heart is an autistic boy who has been suffering since the end of last year. Parents should not have to chase for information, it's very distressing, because it makes you feel very alone and insignificant.

Because of my position, I happen to know the head of CAMHS in our county (a very sincere person, in my experience) and I emailed her to tell her about the whole sorry tale. As I expected, she was horrified and apologised, assuring me she would ensure Son2 received the right treatment and that she would also take steps to make sure this did not happen to anyone else.

However, I am not sure my experience of CAMHS, in any county, is particularly unusual, or even especially bad, and I would be interested in hearing your story too.

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Tania Tirraoro

Founder, CEO at Special Needs Jungle
Founder of Special Needs Jungle. Parent of two young adults with autism. Tania is a member of the Whole School SEND Expert Reference Group for SEND Leadership, the Ofsted SEND Inspections Stakeholders Group, and sits on the Advisory Board of the Royal Holloway, University of London Centre of Gene and Cell Therapy.
She is also an experienced broadcast and print journalist & author. Tania also runs a PR, web & social media consultancy, SocialOro Media. She is a Rare Disease & chronic pain patient advocate with Ehlers Danlos syndrome.
Tania Tirraoro
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Really sorry to hear that your experience with CAMHS was so awful and regret to report that to-date I have only heard of similar frustrating experiences. This so-called professional body are failing our children up and down the whole country. I am part of the autism community, raise awareness for children with PDA, volunteer on an autism support line, this really is a serious and common issue. Not only from the stories that I have been told about, but also from my own experience, the service needs a huge re-think because right now it’s a JOKE, and us parents desperately… Read more »

Thanks very much for your comments, Deborah

Christina

9My son was initially refered to CAHMS aged 10, and subsequently was diagnosed with Asperger Syndrome. We live on the border of a town and were refered to the next town, not our LA. He was investigated and diagnosed there, then we had the trauma of high school. The school he went to (not my choice, we lost the appeal for the one I wanted, despite someone from CAHMS and a psychatrist attending the appeal) had no discipline and he suffered random attacks (verbal and physical) in the corridors. After one such occasion, he tried to strangle himself with his… Read more »

I have 20 years experience of teaching, many in Special Needs and occasionally working with individuals associated with CAMHS. Those individuals were usually perfectly pleasant and honourable people but over my dead body will my child ever have anything to do with CAMHS. Sadly I have seen them do too much harm.

gerry spanswick

Sadly everyones comments about CAMHS rings true with me,my son has autism and PDA,we have been trying to get help for about 4 yrs now,we have tried meds,and have been left with no support when my son had dreadful side effects,we have had to call the out of hours Dr to him twice.They have promised to contact school,but this was never done,one Dr even suggested walking him to school in his pjs if he wouldnt get dressed,when i asked about his dignity she implied that we were nt compliant parents,to which I got up and left,another black mark. They now… Read more »

Rebecca

I have been asking my GP for help since my son was aged 2 (now nearly 9) FInally got referral last year and had a shocking appointment with a stand in doctor who was meant to try and help with backlog of appointments – who forced him to look at her close up and prodded him! I left in tears. Finally got to see our wonderful paediatrician in Dec but due to lack of funding and support it is taking ages. We were referred to speech therapist back in Oct and still don’t have an appointment (they can only run… Read more »

Angela

We don’t use CAMHS anymore, but during the time we did We had more downs than ups. Initially things started off well and with hindsight I can see that this was because the Dr we saw was generally interested in Child mental health problems. He was attentive and listened to what our son had to say, We saw him twice before he was rotated with another Dr. (16 week rotation period) It was then that things deteriorated quickly, We were told at one point that they couldn’t give my son a diagnosis of HFA as they had reached their quota… Read more »

Rebecca

I would also like to add that our community paed is who we see now and is wonderful. The specific child mental health service dept were shocking – they didn’t even want to see my son. It was all about seeing me and teaching me parenting skills. I understand the logic in this but I have read so many books and done so much research that I didn’t need this. I wanted someone to talk to my son and try to understand him and help him to understand the way he feels and the way he looks at the world… Read more »

I can’t express my gratitude to my daughter’s psychologist from CAMHS. She was wonderful. We had to wait for over a year before we eventually saw her, but when we did, I couldn’t have been happier. So it’s not all doom and gloom. Now if you were to have asked about social services, I’d have had a totally different reaction… They were the ones who caused more pain and suffering than they ever helped. Can’t believe they’re supposedly ‘professionals’.

Sadly, I am not surprised by anything you’ve said about CAMHS. I’ve written about this service many a time on my own blog as my son has been under CAMHS since 2009. The biggest problems I’ve encountered are long waiting lists and an inflexible service that doesn’t seem to totally understand autism and the impacts on the family. When my son first became unwell, the school responded quickly and referred us to CAMHS but we had to wait three months for an initial assessment. This may not sound long but for an autistic person who had become suddenly mentally unwell,… Read more »

We had an awful experience of our local CAMHS. The Paediatrician we saw demonstrated no knowledge of childhood trauma (the reason we were there), made some shockingly crass statements in front of my son and couldn’t get his prescription pad out of his pocket quickly enough. The service is patchy, underskilled and understaffed. I feel that children with mental health issues generally receive an inferior service to adults.

kellie

I can only comment that we as a family have had fantastic support from our CHAMS team , and i am not sure we could have coped without it. My son had post traumatic stress disorder following radical cancer treatment. He has a fantastic psychologist and psychiatrist , who not only understood him but helped us as a family when his anxiety became too great and he developed anorexia nervosa. Subsequent to this they realised that he had underlying asphergers and modified his sessions accordingly. They also very under resourced as an area of the NHS and are being heavily… Read more »

slaz

I have been unfortunate enough to have my child refer to CAMHS, unlike the other posts, my child only got to see a social worker, who assessed him for ASD – even though he was not referred for that! she also embarked on some therapy which she had no understanding off and no qualifications in! When I complained I was referred to SS for ‘bad parenting’ – the SS were embarrassed, disagreed with everything CAMHS said and closed the case. so much for helping young people … further research disclosed that there were NO qualified psychologist /psychiatrist and the whole… Read more »

ian

I’m in a position where my daughter has not been diagnosed with anything yet but she is going downhill extremely fast. Behavior, attitude, aggression, sleeping patterns, schooling all very very bad now, her anxiety is through the roof and self esteem rock bottom but after 5 appointment at Camhs now she is just playing games with a psychologist to get to know each other! The situation is tearing my family apart and we are not sleeping, eating nor drinking properly. My other children are really struggling to cope now and we need help as a family because of it all.… Read more »

Ian, have you been offered family therapy? CAMGS should be able to do this. If not, find out who is the head of CAMHS for your area and complain to them. if no joy, complain higher. CAMHS is a health provision and as of next month, health providers are all changing. Visit contact a family website or call them for advice.
Tania

emm

My Camhs team are I am sorry to say just as bad as the rest of them. Have 2 kids under them ,1 with anxiety and depression and also due to us going private, a diagnosis of PDD She has been assaulted by a doctor who was supposed to be helping her. We kicked up a fuss and very quickly got a meeting and were promised immediate help. My child is still desperate and so low that they have not been to school for nearly 2 years. When I asked how to help get her into college they replied, she… Read more »

Auka

My experience with CAMHS is still ongoing, when my son was first referred ,at my request, the primary mental health worker fobbed us off, effectively saying he would ‘outgrow’ his autistic traits. Foolishly I belived him, that was 3 years ago. He is now 10, we struggled on with his unusual and at times worrying behaviour and last year my son became very unhappy, started to refuse school and started to feel suicidal (and make some crude attempts) the school were legally ‘helping’ but in reality only making it worse (by saying similar things as I am reading above, like… Read more »

mandi

do i as a parent have no rights regarding my sons care i no longer want him under camhs i feel they have no intention of helping him and would rather blame us as parents, we have been told we cannot take him out of camhs as camhs have to approve his medication, we were also told the person he sees now has to agree to him seeing someone else(highly unlikely) and if we have a complaint about them it goes straight to the person u are complaining about how is that suspose to help how do i get my… Read more »

Becci Barnes

My now 17 year old Daughter was referred to CAMHS following a diagnosis of anorexia by her GP – the reason why my Daughter actually ended up with anorexia in the first place was due to her suffering from PCOS which caused huge weight gain, the solution of which was for her to go on a strict calorie controlled diet (this was monitored by her paediatrician and dietician) which for several reasons ended up going too far! Anyway, all CAMHS was concerned with was my Daughter gaining weight immediately – her stopping losing weight during the first week wasn’t good… Read more »

will

I hm father to a 13 yr old girl with Asperger`s. When she started to develop symptoms of OCD I asked for a referral through the Autistic Support Team. 8 months later we were referred for CBT. By that time her symptoms had become worse, and she had stopped going to school and had become very restricted in her eating. After 2 sessions of CBT of half an hour a time, they said that the therapy was not working, and suggested more specialist help from a unit such as Maudsley. I agreed with this, but with the qualification that it… Read more »

Reblogged this on chaosinkent.

speakeasy

So sorry to hear of your trauma. My 16 year old ASD depression and anxiety has been made worse by CAMHS. (Stockport). She is now housebound after being left home alone for the whole of year 11. ” years down the line we are no better after begging every service for help for 3 years. Who will help these children?

rebecca

I can only add to the catalogue of misery expressed here. My daughter is 14 diagnosed ASpergers 3 years ago. Initially I was told by my GP to go to CAMHS for a diagnosis this information was incorrect. at the time the PCT had a policy of refusing to give any help to ASD children because they did not fit their “criteria”. This is still the case now 2 years on but it is more covert. The children languish on the waiting list. Complaining may get you seen but you then realise that the clinical psychologist seeing your child is… Read more »

Wow, what a story! Did you make an official complaint? It would be good to try to build up a big picture of people’s CAMHS stories to try to improve the service where it is sorely lacking!

sue lloyd

Please help my daughter is 13 she is getting no help from the doctor she is seeing at shropshire cahms, she wants to take her own life she sees dark figures she hears voices in her head telling her to kill herself and the dr still has not come up with a condtion all she says she dosnt fit in a box. my daughter says no one is listening to her

Hi
If you have already spoken to CAMHS about your daughter’s suicidal,thoughts to no avail, you can complain about the service or ask for a second opinion. I know that even so, you may not get satisfactory help so here are also other sources of support.
SANE http://www.sane.org.uk/what_we_do/support/
Mindfull: http://www.mindfull.org/who-can-i-talk-to/
Young Minds http://www.youngminds.org.uk/
Have a look at the help here and call the helplines for advice on how to proceed.
Good luck, and let me know how you get on
Tania

natasha

Our son(9) was referred to camhs last summer after taking him to gp with high.anxiety. They were initally very good and it was his therapist there that picked up on him possibly being on spectrum. He was referred to a locum consultant physc who went on first meeting agreeing he needed an asd assessment to.changing his mind and us having to fight for one. He gad ados assessment 7 wks ago and are still waiting for results!! On top of this his thereapist went on long term leave (which couldnt b helped) in july and isnt starting bk till end… Read more »

Michelle Cavanagh

My problems with Cahms began when my 12yr old son started to talk about wanting to die. For years I had been involved with young mind, changes even cahms each time cahms saying that my son was better going to other organisations as he was suffering with anxiety until the crunch when he refuses to go school. I had spoken with friends and she mentioned high functioning asbergers with hypersensitivity, and someone else that I had met had also met my son a few weeks before said he has a brother with autism and he also works with autistic children,… Read more »

Heather

Is this feed still live? I can tell you that CAMHs has not got any better. Is this feed still live? I can tell you that CAMHs has not got any better. My son was born in 2007. When he started Nursery in 2009 staff raised concerns with me about my sons behavior. I went to my GP who said that my son was a boy, that it wasn’t unusual for children his age to display these types of behavior. At home he was pretty much the same but as he is my only child, I just thought that this… Read more »