Children’s Mental Health: Our experience of CAMHS nearly broke us

Duchess of Cambridge

The children's charity, Place2Be have launched the first Children’s Mental Health Week this week.

The Duchess of Cambridge yesterday spoke of her and her and Prince William's belief that early intervention is imperative if we are to prevent mental health difficulties continuing into adult life and, with the cost upward of £105 billion in public spending for adult services, the earlier the intervention, the better for all concerned.

Mental Health Timebomb!

Lucy Russell, Campaigns Director of Young Minds has said the country is sitting on a mental health time-bomb and, as the last review of Children's mental health provision was in 2004, there is little doubt why there is an urgent need for a 'good enough' mental health service, especially with huge pressures of target-driven education, cyber-bullying, sexting infiltrating in to our young peoples lives as well now!

CAMHS – The main source of ‘support’

For many of us hearing, ‘I’m referring your child to CAMHS' (Child and Adolescent Mental Health Service) can send you cold, the hairs stand up on your neck and your face pales, particularly if you have had previous experience of the service.

Maybe it’s your first referral and you don’t know what to expect for you and your child so you see this as a potential lifeline and go to the appointment full of hope that finally someone is listening to you and that help is just around the corner.

Perhaps you’ve heard stories about CAMHS but don’t know what they are about, what they are supposed to do or how they can help This link may help: NHS Choices Childrens Mental Health Services Explained

As there is little option other than to be referred to CAMHS via your GP, it’s not surprising then as a parent, you put a lot of expectation into the initial appointment. Why shouldn’t you? Look at a CAMHS website and it can be like looking like the answer to all your prayers. They tell you of services that are available for a variety of different disorders and needs and give hope in a hopeless situation. Come to us and we'll help! Your child is safe in our expert hands!


Improve your parenting!

So why is it that so many parents and children are left feeling abandoned, let down and disappointed? Far from the service being as good as the website, parents often tell us that they come away from appointments feeling unheard, talked at, and dismissed. One parent who works as a professional in the healthcare system told me that at her child’s appointment, she was treated with the same scorn and contempt as that of a contestant on the Jeremy Kyle show, her parenting under close scrutiny as a cause of her child’s mental health difficulties. She also told them this too, only to leave them open-mouthed and speechless.

Another CAMHS doctor decided it was a good idea to withdraw approved anti-depressant medication from a child in his GCSE year, even though the last time they had tried this it had had a seriously negative effect. When the parents (and young person) disagreed, she made claims of "research" that supported her view. She also contacted the child's GP behind the parents' back to push her "research" story. When the parents asked her to identify the research, she could not, probably because after thorough searches, they found that there isn't any.

BBC Radio 4 reported that CAMHS spending has been reduced in 60% of local authority areas, this is in spite of the fact that mental health difficulties in children are increasing fast. Last August, Health Minister, Norman Lamb described Youth mental health services in England as “stuck in the dark ages” and “not fit for purpose”. He announced that a government taskforce would be set up to improve child and adolescent mental health services (CAMHS) following concerns raised by NHS England about inappropriate care and bed shortages.

CAMHS again came under the spotlight last November when the Health Select Committee published a report about the services they are providing to our vulnerable young people stating,

‘There are serious and deeply ingrained problems with the commissioning and provision of Children's and adolescents' Mental Health Services. These run through the whole system from prevention and early intervention through to inpatient services for the most vulnerable young people’

The report makes grim reading, especially when CAMHS is your only port of (free) call.  We would be very grateful if someone could enlighten us as to what has happened since then and whether there will be parent and young people with experience of CAMHS as representatives on this taskforce.

Below is an infographic prepared by Mental Health Today that I hope they don't mind us reproducing. It contains startling figures.

mental health today
Click to enlarge. Find the original here:

CAMHS or the Paediatrician – Who can help?

I hear regularly, and have experienced myself, that if your child has an additional learning difficulty or a diagnosis of a neurodevelopmental disorder such as ADHD or ASD or a neuropsychiatric difficulty such as Tourette syndrome, Conduct Difficulties or OCD, there is very little help available from CAMHS. So you instead, either seek help within the community or see a paediatrician. When seeing the paediatrician, they tell you to seek support from CAMHS. Who can't help. And their budgets have been cut.

For us as a family, this has almost broken us. Our frustration has spilled over on many occasions as we have been unable to help our son. He has been out of school for coming up on three years now, due, we believe, to anxiety. Now in Year 11, he is only likely to attain a foundation-based maths GCSE. For a child who has an above average IQ, it is so difficult to comprehend that we are in this position because it could have been prevented.

When he first went to CAMHS, all he needed was a doctor who listened to him and heard what he needed. Instead he was perceived as wasting the doctor’s time and the doctor actually told him to 'pull himself together'. I was speechless! At the time, we vowed never to return to CAMHS again but several years later we had no choice - and it really was a last resort.

I asked to be referred to a different CAMHS office but was told this wasn't possible and was assured it would be different this time. It was different - it was worse! My son was told he needed to go to school and if he didn’t he wouldn’t get an appropriate education (I wonder if they thought we hadn’t already explained this to him.)

Looking beyond the behaviour

CAMHS could or would not see beyond the behaviour, to discover the root cause of my son's issues. The need to do this is fundamental - so much so it's even in the new SEND Code of Practice as a guide to teachers to find out why a child is presenting with difficult behaviour rather than ONLY just dealing with the behaviour itself. As a newly-qualified mental health professional myself, I know that this is imperative when helping anyone experiencing mental health problems, let alone a child.

One CAMHS 'professional' very recently told my son he will have outgrown his ADHD by the time he is 18. Unbelievable! We are aware that his symptoms may dissipate with maturity but the notion that he will awaken on his 18th birthday ADHD-free, is completely bonkers. Even if that was the case, it wouldn’t take away his whole school experience where he has been left with anxiety and self-esteem issues, lacking confidence and inner self-belief difficulties projected on to him by people who told him because of he had ADHD that he was not, ‘good enough’.

Of course I made a complaint and this gave me the opportunity to explain what I felt went wrong but, as we discovered recently, nothing has changed, at least not yet anyway.

I don’t believe that the doctors don’t care or that they're evil, I believe they have become desensitised by an overwhelming caseload not matched by the budget to make a dent in it. But this can lead to value judgements, comparing one child's need's to others receiving mental health support (possibly in different tiers) and deemed to be, ‘not as bad as those children’. Children need to be individually assessed and treated for their own condition, not have their mental health measured again someone else. At the moment CAMHS and "Person Centred Care" cannot be uttered in the same breath.

This is a problem that needs addressing and soon. Health providers and local authorities need to ensure that no more cuts are made to the CAMHS service and that current provision is fit for purpose. The system is broken and requires a fundamental re-think. With health provision being an integral and statutory part of the new Education, Health and Care plan nothing less is required or an EHCP will become nothing more than an an old-style SEN statement with its fingers crossed.

I have added some websites that might be useful to source other help while waiting for support and we would love to hear your stories about your or your child’s experiences, good and bad. Please leave your comments below.

Angela Kelly
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  1. Alison Wiles

    My autistic son, now 18, was seriously let down by CAMHS. He had a breakdown at his previous special school at 17 and was unable to return. He should have been there until 19. Our son had been abused by a teacher and immediately I called the police who interviewed my son twice but because he has severe language delay was unable to tell them what he told us. The teacher was not suspended pending further investigations and CAMHS said it would ‘muddy the waters’ if they got involved and helped my son’s post traumatic stress. It was unbelievable that our son was left this way. He was suicidal and hitting his whole body with great force. This went on for a solid 3 months at home. CAMHS did not have the expertise to deal with children with special needs. In fact they sat there with their mouths wide open when we told them what happened. Now we are facing the same problems and lack of help with adult mental health. My son experiences flashbacks to this day. There needs to be a radical shake up in the system and it is imperative that our children are given time, patience and above all understanding and vital support.

  2. Cary Canavan

    We have used CAMHS three times in 2 LAs.

    The first time I sought help was in 2008. My husband had left us and my son, who had recently been assessed as possibly having Asperger Syndrome (we had been referred for diagnosis with the Child Developmental Centre by our GP) was distraught, self-harming had suicidal ideation. I was crying and asked for help. The person who answered my call asked me if he was likely to kill himself as they had children who were likely to throw themselves off a bridge or under a train! I told him no as I was on suicide watch. In the end we got help from Relate.

    During diagnosis we were referred to CAMHS and he received counselling from a mental health nurse, which was useful, as it helped him find his voice and deal with the breakdown of the family.

    Several months later, when he was trying to deal with bullying in school, we were again referred to CAMHS but only got help after I went and sat in reception crying for half an hour. I managed to get more counselling. It was dreadful – no appreciation of his mental state: they treated him for low self-esteem and he was asked to keep a dream diary (he had received his diagnosis of ASC by this time). We stopped going. CBT is not effective with our children.

    The last time we were referred to CAMHS was because I requested a referral for an assessment for Autistic Catatonia. He was being assessed for narcolepsy. I told the medical professionals in the Neurology Dept in the hospital that I thought it was AC not narcolepsy – none of them had heard of AC and I had to provide them with the paper by Lorna Wing and Amitta Shah. No-one in CAMHS had heard of it either. However, by the time we saw the Psychiatrist he had read the paper and came to the conclusion he should be assessed by Dr Shah – this was 9 months ago we are still waiting for the referral.

    2 years ago our local CAMHS held stakeholder meetings, which I attended regularly. I attempted to highlight a number of issues as related above – the way they regard us as parents; lack of diagnosis for girls on the spectrum who were more likely to leave with a diagnosis of personality disorder, depression or bi-polar disorder. Of particular concern were those with anorexia and self-harming but who may have had an ASC. At one of the meetings with professionals, an educator actually said that parents sought an autism diagnosis as a gateway to benefits, which went unchallenged, until I told them that their comment was inaccurate and offensive and demanded an apology.

    I urged our local CAMHS to work closely with schools to help support our autistic children, as most of the issues for which parent were asking for help with their children had their nascence in the appalling treatment they received in mainstream education, mainly to do with bullying.

    While I have not been referred to parenting classes via CAMHS, I know many parents who have. They have also been referred to Child Protection (2 parents, I know, 6 times each in 2 years!) notionally diagnosed with Personality Disorder, Attachment Disorder and Munchausen’s, when they have sought help and support to manage school refusal and behaviour management. I thought Bettelheim’s and Freud’s theories had been debunked, clearly not.

    Our local CAMHS actually has it written on their website: The CAMHS service does not accept: … children with Autism Spectrum Disorders in the absence of a primary diagnosis of mental health difficulties. Where do our children go?

    To say that CAMHS is not fit for purpose is an understatement. I have also pointed out to a number of departments in the LA that the lack of provision and support for our children is a false economy. They are: being failed by schools; sent to BESDs and PRUs when schools fail to make appropriate adjustments; physically and mentally harmed when restrained in these places (adults have more protection); unable to receive appropriate care for mental issues; suffer from anxiety; low self-esteem; suicide ideation; self-harm; become isolated – refusing to leave the safety of their home; fail to make friends; go out to work – the cost to the economy is, as this article pointed out, astronomical.

    This has been a very difficult post for me to write. Every time I read about a child committing suicide or harming someone in a school, my blood runs cold. Parents are having to deal with their children’s mental health on a daily basis. I an a number of other parents are trying to engage with out local services to address the complex issues surrounding children on the spectrum yet getting front of these people is nigh impossible. I have written to the Ed Timpson, other MPs, as well as local services and am left with the distinct impression – no-one who could make a difference – actually cares.

    Someone has to speak out – few of us do – we have no time, as we struggle to recover our children. This cannot continue…

    1. Angela Watts Kelly

      Thank you for sharing your story and I am sorry to be reading how you have been let down and continue to be let down. It sounds like you are working extremely hard, have you spoken to any charities such as Young Minds or Minded to see if there is any joined up working you could be doing together to make your voice stronger?

      1. Cary Canavan

        To be honest, Angela, I haven’t got the time. I am on the steering group of a Family Forum and am part of an activist group trying to make our voices heard in education, health and social care…

        Ironically, we are working with our local police force for autism awareness. They have been the only people willing to listen – after pressure was applied from the PCC office. However, we made an impact because while parents’ individual stories informed our presentation – we made practical suggestions as to how we could all move forward. As a result we are going to speak to the new Victim Care Unit manager on Thursday.

    2. EJ

      Cary your story is so familiar, sadly. Both my children are on the spectrum. My eldest however, was assessed for ASC by CAMHS and as they have no autism expertise (certainly not in high-functioning children anyway and most definitely not in girls) they didn’t diagnose her. I had to insist on (and write and send in a long submission with research and information) a 2nd opinion out of area. She was then diagnosed but because our Trust paid for it and they sent their erroneous assessment material along with the referral, the new clinic relied on that as a foundation and clearly not wanting to bite the hand that fed them, came up with a middle ground diagnosis of “PDD Other” claiming that her difficulties were not severe enough and that she had a subtle presentation (sheer lack of recognition of female masking and mimicking). She has all the traits of Asperger’s and as I have it myself I know what I am talking about. I had a social worker telling me that PDD Other wasn’t even autism and even now, the SEN department have not put on her statement/EHCP autism as a primary need. She failed to cope at two consecutive secondary schools and has now been off school for all of 2015, she has no friends and her world has got smaller and smaller. Just because of the well-known holding it all in at school and releasing it at home, they judged that based on an artificial environment of an assessment clinic, she wasn’t severe enough. They ignored what I was telling them about her challenging and sometimes extreme autistic behaviour at home.

      The same CAMHS who saw her concurrently as the out of area clinic, failed to recognise her depression and anxiety despite suicidal ideation and threats to kill herself. Yet the out of area clinic who diagnosed her ASC, also diagnosed her depression and anxiety disorder.

      I got copies of her records and found out that whilst our CAMHS had stopped short of MSBP/FII accusations they were heading that way and falsely claiming I had mental health problems and even suggesting I be assessed for mental health against my will! The way they gossiped about me and maligned me behind my back was staggering. They even admitted to one another not to be reading information I was sending them for her ASC assessment.

      Fast forward, we had to approach CAMHS again for mental health support for her, they sent a counsellor who clearly had no training in autism and I got to witness in every session (she wanted me present) his assertion that he was unable to help her and waffling on about her hair and how she takes pride in her appearance. She often left the sessions in tears and feeling more desperate than ever.

      Our other autistic child was referred for severe anxiety by the paediatrician to CAMHS and they delegated the referral downwards to tier 2 who offered a talking anxiety group which was nothing to do with autism and which predictably she would not attend. That shows they have no understanding of autism as a then 7 year old autistic child, which means communication struggles as well as trouble identifying emotions, would clearly not be able to sit in a circle talking about her anxiety with other children! They simply closed her file and left her with severe anxiety which has really negatively impacted the family ever since through the resultant challenging behaviour.

      I could go on for hours, they are appalling. I have spelled out to them what they have done wrong and they just ignore it. I don’t believe it’s even about desensitisation and lack of funding, it goes a lot deeper. The automatic blame culture and utter lack of respect for parents is breathtaking, they seem to live in a bubble, they don’t bother to keep up to date with research and best practice, they treat autism assessments like a tick-box exercise and to imagine these people are qualified in anything, beggars belief. Their ignorance astounds me. If I, as a parent, can educate myself on autism with the free resources out there, how can supposedly clinical psychologists and psychiatrists know so little? How can they also care so little?

      Our eldest daughter refused to see their counsellor again, so we went back to the GP and asked for someone more highly qualified and autism trained from CAMHS. That was about 6 weeks ago and despite contacting even the head of CAMHS direct, we are still waiting. They simply don’t care. This is more than apathy, I don’t even know what you would call it. How can they even sleep at night knowing what they are doing to these children.

  3. Lynn

    My experience of CAMHs is very hit and miss to say the least. My eldest son was referred to CAMHs and was diagnosed with Autism at ten years old after the standard 18 week wait for his first consultation (which is still the same length of waiting today). We were given the diagnosis and the NAS website address and left to it. No follow up and no advice – numb with shock, I was left to do my own research and dig about to find out about what services my son could access. When I brought up the sticky subject of DLA with the consultant I was made to feel like a lower member of society discussing my finances and was told in no uncertain terms ‘please do not think that you can ask me to fill out one of those forms – I simply do not do benefit claims!’ Four years later, my son went through a traumatic time at school where his ongoing bullying increased sharply and he had his bike stolen from the school grounds (his bike was his whole world and to him, represented the freedom he said he didn’t have). As a result his negative behaviours surfaced and he was sent home from school on two occasions as they said they couldn’t deal with him – on the second occasion, he was extremely angry and upset and I settled him down into bed in the afternoon and sat downstairs, locking the doors and taking out the keys as I felt he would run away again. My youngest son came home from school and asked if Jack was coming home, I told him he was upstairs, but my son said he wasn’t there. I found the bathroom window wide open – my son had got out of the window and jumped onto the porch roof down into the front garden without me seeing or hearing him. I tried ringing him but had no reply – I then had a text telling me that he was going to jump off the nearest bridge – i called the police who found him and brought him back. They said that they wouldn’t section him as he had a ‘good supportive family at home’. I made an emergency appointment at the GP and was told by my doctor that he ‘didn’t need specialist help and that he needed to see someone at the Zone (youth support)’ she also said that ‘its your fault for talking too much!’ In desperation I went back to the school to get a referral to the CAMHs outreach team (COT). I got an appointment a week later (my husband and I were on constant suicide watch and were extremely tired. My son was seen by two psychiatric nurses on two occasions and was dismissed from the service as they felt he was ok and the voices which told him what to do were part of his diagnosis of Autism. On both occasions they didn’t ask for my thoughts as a parent even though my son was only fourteen. I asked them if they were trained in Autism and both nurses said that they weren’t….
    The third and arguably the most frustrating referral for my son was for help with his mental health state following him being sexually assaulted by an adult claiming to be a minor in a park in broad daylight. The police threw it out saying it would prove more detrimental to his health pursuing it that letting it go… The police referred my son to CAHMs but the referral pathway rejected it, My son’s GP (a different one!) referred in but again it was rejected. I wrote a letter of complaint to the Customer services department of that health department and was contacted by the manager of CAMHs who managed to get me an appointment in ten minutes! Three weeks later, he had his first appointment with an excellent consultant who promised to help him – we had to remind CAMHs that my son needed a follow up appointment as they hadn’t sent one out and I had to contact CAMHs by telephone to make another appointment as we were waiting over three months for another follow up as my son’s health was deteriorating. I was told that my son’s consultant had left the practice. We saw another doctor who went through the motions and said that he would be looking to discharge my son to his GP as he was now over 18 years of age . I am really worried about him now as although he is ok at the moment I know this could change and I know that there is a huge gap of provision for people like my son in adult health care. CAMHs may be awful, but mental health for adults on the Autistic spectrum doesn’t even hit the radar…………

    1. Angela Watts Kelly

      Thank you for sharing your story, I’m really sorry to read what your family have been through. It seems that very similar stories are emerging and that adult services are not adequate for what your son needs either. SEAP offer advocacy and might be able to offer support Good luck

  4. Esty Wood

    Our son had been school refusing when I self referred to camhs via our GP. The nurse there was brilliant, gently suggesting he may have a social communication disorder. It was his school who then decided I was using this as an excuse for poor parenting, as if I wanted him to have it. School threatened us with non-attendance and pushed for parenting classes.This despite the fact we have an older son who was top of his year with 100% attendance. I actually went to one class to shut them up – it was humiliating. Most of the other parents had learning difficulties and their children were in custody of one form or another. We are both teachers and know the difference between a child playing up and a child crying for help. Our son was overwhelmed and simply couldn’t cope. We had awful problems at home as we were trying to get him into school. I had to give up work as I couldn’t get in on the days he refused. Camhs had a 12 month waiting list for diagnosis and school were still making veiled threats and refusing to believe it was ASD. They didn’t even let us see the SENCO, it was dealt with by EWO and attendance people. We had no option but to get a private diagnosis, which we could ill afford. She was wonderful and confirmed he had Aspergers – and despite our previous experience, she said it was because we were such good intuitive parents that it hadn’t been a problem til he was 11. We’d actually been catering for his quirks and sensory issues and working around them, supporting him all his life without realising. After a couple of years of no-one providing for him educationally, one failed placement in inappropriate places after another, we deregistered him and home educated. It took 6 months for him to become his old self – that’s the damage that pressuring him to go to school had done. I wish I’d pulled him from school years before.

    1. Claire w

      Esty, how did your son get on in the end?? Were in the same position with our son. His 15, he simply can not go to school. My worry is if he gets home schooled, How does he socialise?

  5. Morwenna E R Stewart

    Similar story to everyone else. Son expressing suicidal thoughts/feelings, CAMHS don’t think that serious enough to warrant an appointment. I’m seeing my MP this month, but doubt he can help. Excuse my cynicism, but it’s only SNJ, NAS and others who give help or hope – not the NHS anymore.

  6. Lynne

    My GP referred us to CAMHS as an emergency when my, then, 8 year old son started expressing suicidal thoughts. In fact we didn’t even need to see the GP. I spoke to the receptionist and she spoke to the GP and he did it straight away without a second thought. I was really impressed, but not for long. We were given an appointment for 2 weeks, which didn’t strike me as very “emergency” but I thought, “give them the benefit of the doubt. They’re busy”. Besides, it was faster than the standard referral of 3-4 months.

    So along we went to the appointment. One, one hour appointment. We went through his history while he played in a corner and constantly interrupted us. He was not talked to at any point. I was then called back by myself a week later and told, ” Well, I think he’d really benefit from group therapy, except that he’d take over and want to run it which would be no good for anyone else. And he’d probably do really well with art therapy but he’d have to engage with it and that might be a bit hit and miss if he doesn’t get on with the therapist. So there’s nothing else we can offer you. Bye”. Not even a “good luck”. They did suggest parenting courses, but since we’d been on about a dozen already (it was 14 in the end), the look I gave her probably told her not to pursue that one further.

    I hope I never have to have cause to cross paths with that shower again.

  7. disinterestedobserver

    Important article Angela. Thank you. My son was referred to CAHMS age 5 (11 years go now) where he was diagnosed with AS. There was a long wait for an appointment back and generally understanding of AS/HFA and related conditions were poorer back then. But we were lucky enough to see a consultant clinical psychologist who understood his condition and so we avoided all the red-herring over scrutiny of our parenting. Parenting techniques for ASD children were discussed at appointments – but that was fine and immensely helpful. She was respectful, understood and helped us hugely including putting us in touch with another parent so we could find out more about suitable schooling options because she knew from experience that children with a similar profile often unravelled horribly at secondary school. That saved us a lot of pain. When we came to consider schools five year later though, her contribution to the secondary statementing process was largely ignored by the LEA and we had to go privately to get reports we needed. We were lucky. That was at a time when CAHMS was funded properly. She was recently made redundant and she has not been replaced which is a huge blow to all those children and young people coming through the system now. She didn’t really do any specific therapeutic work with our son (it was felt he was too young to engage with CBT) but her advice over the five years was with her was a game changer for us as a family. It could have been so different, much more like Angela’s experience above. She recommended books, put us in touch with parents and helped us secure an increased care package from the Disabled Children’s Service when my son hit a very, very challenging phase at home. She even secured a short course of play psychotherapy for my daughter which really helped and came to look around the school my son eventually attended before discharging him to the care of the school psychologist, More than anything she understood my son from an early age. She also had a particular interest in autism in girls too which is unusual. Back then AS/HFA diagnoses from that service in our borough alone were running at around 40 a year a few years ago which I personally think is a good indicator, not a bad one. It can work well with the right professionals and the right funding.

  8. eve1001

    For the last few years my 12 year old son has been engaging in more and more risky behaviours; compulsive lying, shoplifting, stealing money, credit cards, bank cards from home, extremely violent temper tantrums and threats of suicide we are fighting to get someone to take our concerns seriously. We have taken him to the local police to speak to him, his support teacher at school, our GP and our local CAMHS tea.
    After years of pleading for help we have now been assigned a social worker after my son manipulated our GP who told us his behaviour is due to our poor parenting who after 10 weeks still has not arranged any family therapy or anger management.
    We are now battling our local CAMHS team to come and assess our son as rather than deal with any consequences he’s threatening suicide and has various well through out plans so the intent is there and we had to take him to A&E as we were so concerned he would follow through on his plans! The CAMHS team suggestion is that we just brush the most recent instance of theft under the carpet and try and move on and speak to his support teacher at school for guidance. Surely there’s more they can do as we were sent home from A&E and told to monitor him ourselves as they didn’t have the staff to do this overnight and assured someone from the CAMHS team would come to our home and assess him but they are refusing to do this .
    Meanwhile we have to get our 4 year old daughter looked after by her gran and removed from the home temporarily for her safety and I am forced to take time off work to look after our son and hope he doesn’t decide to follow through on any of his suicidal plans on an impulse!

    1. Angela Watts Kelly

      Dear Eve, My heart really go out to you on reading your comment, It sounds like the home situation is really spiralling for you. I can hear there is a lot going on and it can be difficult to know what to do first. Are you able to speak with your son when things are calmer? Find out what he feels is going on for him and what he feels might help him? Does he know how much his behaviour affects you all? Would it make a difference if he did? Is he aware you are worried about him? These sound really basic things I know but can be a really useful way of piecing together what it happening. Young minds have a great website with some support signposting .I would also suggest recontacting your social worker and finding out what is causing the delay – Be calm and email if possible as it can be easier to put into writing what it is you need to say. You don’t mention any diagnosis (if there is one) or what area you live in so I can’t really signpost you to any other support but if you are on FB then there are lots of Facebook support groups. Is there a family link worker at school as often they have lots of information or the head teacher at the school. The local childrens centre (you mention your daughter is aged four) may be able to support you too. Check out action for carers/ carers support as they too can be a wealth of information . Are you able to access any therapy just for you via your GP/counselling service to give you some support whilst this is ongoing for you all? I really do hope this helps.

  9. Katie Hawkins

    My daughter has had problems over the last two years. She went from being a ‘happy go lucky’ child to a monster. It started around year 4 but was manageable- we thought it was hormones. She is now so out of control that we have had no choice but to seek advice. She hits us and her siblings, swears, tells us she wants to be murdered, wants to jump from the windows, and that she hopes outsiders can hear it all so she can be taken away. She punches herself and tells me it’s my fault. She has tantrums thst last for hours and hours. She finds it difficult to complete tasks such as cleaning her bedroom. She goes through on rare ocasions, periods of calmness, so calm infact that she almost looks zombiefied.
    When she is having a good day she is calm and wonderful. The sweetest most thoughtful child you could wish for, she’s smart and witty. When she gets into states she cannot stop it, she has memory loss also. Now heres the strange bit.. she’s excellently behaved at school.. and so who is to blame? Us of course the parents. I’ll tell you a little about us. I was a young mum at 16, I have 3 children eldest 12, youngest 8. We both work, I in a school part time now due to home educating my eldest because of bullies. My partner who is all 3 of the childrens dads whom I am still with and am marrying next year! Works full time also. We are both taking driving lessons to better all our lives and take out family more places. We are parents who implement rules. If they are badly behaved they are sent to bed or kept in. They have privilages taken from them also. The problem is that our daughter is determined not to follow rules. No matter how many times we implement them. We have tried ignoring and also as a last resort shouting- sometimes anger gets the better of us. When you’ve been listening to it everyday it does start to grate on you and the rest of the family.
    Anyway as a last resort, we went to our doctor who referred us to the wonderful CAMHS. I thought we are believed, we are going to get the help she needs. How wrong I was, I got a letter this morning saying that after careful consideration and discussion the referral is not appropriate for CAHMS. wait for it… however they would suggest we are referred to adult education services ‘parent services’ to manage her difficult and challenging behaviour. I am so angry with their decision to send out this letter. They have never met us or her and have already formed an opinion of us..
    I will be taking the matter further as I believe that they are wrong. Myself and all my family members have mental issues yet they fail to see the alarm bells ringing.

    1. tanya

      What you have explained is my daughter to a tea she is 12 and I have just given up hope we try so hard to get help and guess what I got the exact same letter it’s disgusting 🙁

  10. victoria gibson

    Hi everyone….firstly, although your stories are sad, I feel some what relieved that it’s just not me. Having a child who has problems can be a very isolating experiance. So this has been our journey so far; since the age of 2, N has always been quite a hyperactive child. He would have violent temper tantrums, but I just put this down to terrible twos. Then it went onto terrible 3’s, 4’s and so on. By the age of 7, N was having full blow explosions, threatening to harm himself, very violent towards me, would trash his room, smash things, I couldn’t take it anymore. What was concerning me was he would switch from a normal child to a moster within a split second.

    A family support worker started seeing him, having one to one sessions at home and at school, she put it down to behavoural, my gut was telling me that there was more to this than just bad behaviour. Baring in mind, this child was overly developed in build, 6 pack by the age 8, hyperactive etc but this was never taken into consideration.

    Over the years and now 14 years of age, his violence has become unbearable, he’s used drugs, swears at me all the time, pushed me at the top of the stairs, pulled my hair whilst driving, hit me, head butted me, broken my hand…..this is endless. Again these rages would happen within a split second, he changes immediately and becomes uncontrollable.

    After these rages, he doesn’t remember a thing, he genuinley doesn’t. Actually, he’ll remember up to a point, but when he’s gone, that’s it.
    He was assigned a pre youth offender worker, again everyone assumed it was bad behaviour, this isn’t bad behaviour, this is a mental health issue, even mental health workers at Mind and other organisations agree.

    I’m waffling now, but the latest update is CAMH have said they are not referring him for a mental health assesment ( even though they have not seen him in person ) as they believe its behavoural. Any advice anyone?

    1. Angela Watts Kelly

      Have you been told what ‘behavioural’ means and what they mean by it? It might be worth knowing this as it can give you more information to know where to go next. Behaviour is always a communication of some sort so what is he trying to communicate to you that he can’t do in a way that is not harmful to you or himself? Have you ever had an EP report by the school? Or had any other professionals involved that can support a referral to CAMHS (teachers/police/youth offending)? It might be that you need to ask for a tertiary referral to another provider to see if they can help.

      1. victoria gibson

        Hi Angela, thanks for your reply. When speaking to the specilaists via phone, they simply said they believe it’s a behavoural and not a mental health problem to which I assumed it was them meaning that he’s just naughty. That said, I have not questioned them about it. I haven’t had an EP report, With regards to a refferal outside of the GP, no one has made an refferal although the police haven’t made a refferal although they agreed that there was a mental health issue there.

        1. Angela Watts Kelly

          If you feel able to I would ask them for clarification of what this means. Also keep a diary yourself of when the incidents occur – what was happening before hand that may have triggered his responses. Can you go back to the police and ask them to make a referral, they can do this and have done in the past for other families (especially if they believe it is a mental health issue) Re your GP you will probably have to do your own research and approach your GP with where you feel would be an appropriate tertiary referral – The Maudsley is the one that covers the south East although this may be different for you depending on what area you are – – Facebook groups can be a great source of support and info too.

  11. Samantha

    My daughter first got referred to cahms when she was 13, she was suicidal and had tried to kill herself, along with self harm and serious depression to the point where she wouldn’t eat or leave her bed, so when I heard that cahms would help from the gp, I said okay lets give it a try. It was awful, they never gave her any help, and ended up discharging her after about 2 weeks. So I got her a normal counselor and she seemed okay for abit, then at the age of 14 she got bad again, with panic attacks when having to leave the house, along with her depression and now she was comfort eating so the gp referred her to cahms again, then they started treating her for some phobia thing she didn’t even have, and when she told them this isn’t helping they just discharged her, and now at the age of 16 she was referred again after trying to commit suicide after having a mental breakdown and this time I was dreading it, I thought not again. However she had a guy who she really liked and made her laugh and was actually treating her for anxiety, however this guy wasn’t a permanent worker there so when he left, she got a new doctor, who hasn’t helped her at all but in fact has made her worst, she stopped the treatment the guy was giving her and started digging into her head, she told my daughter she was fat and that she comfort eats because she is alone, as you can imagine this made her feel 10x worst, this physch also tried to give my daughter diet tea and my daughter isn’t even fat she’s a size 12, and now they’re discharging her and she isn’t even anywhere near better, saying they’ve done all they can to help. The worst thing is, this couldn’t of happened at a worst time, shes basically hasn’t gone into school for 2 years and now they want her back as her GCSE’s are right around the corner within 2 months, along with college interviews, mock exams and a whole new world she isn’t used to, I cannot force her, at the age of 16, the school isn’t supportive and doesn’t see depression as an illness, I really thought to have some support in her life would help her get through these steps, so she can finally be a normal teenager who will go to college and have friends and be happy, but instead its made her feel worst, I don’t know what else I can do.

  12. lucyjo

    This story is very familiar – we currently have an ongoing complaint with camhs for bouncing us back to the consultant who could not help and one year later we ended up back there and hey presto they took better action diagnosed with LD, promised the earth and heard nothing since – even with a complaint hanging over their head !!! my son has now been a year out of education and has finally just been given go ahead for speicalist school but guess what …no schools have space so he is still at home!!! if they had took correct action the first time, he may well be in school by now

  13. lisajin3141

    I’m sorry to hear you and your children have been treated this way. I believe you all and I am sorry to say that AMHS blames the patient often enough too… you’re much more likely to get help from charities or even counsellors who offer concessionary fees than from MH services IMO. I hope to become a counselling psychologist in future as I desperately want to change this especially for young people, but omg they shouldn’t blame you. Have you tried the Citizen’s advice service for DLA if any of you are doing benefits forms? They can help you do the forms for many benefits and get as many doctors’ letters outlining specific limitations that fit the point descriptors as possible if you can… I’m no expert but I wish you the best of luck. This is so sad. Off to deal with complaints about AMHS with my friend 🙁

    Oh, and school bullying sucks. I didn’t know of red balloon until university but maybe if school is harming your kid they could move to a school set up for kids who’ve had to leave school due to bullying. Kids need a listening ear and kind treatment – we all do, SN or no. Not sure if childline, Samaritans etc can help at all?

    Good luck and bye for now,


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