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

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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.

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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!

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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: https://www.pinterest.com/pin/455145106064769996/

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.

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Angela Kelly

Psychotherapist & SEND parent at Emotions Counselling & Psychotherapy
Angela Kelly is a practising psychotherapist in Surrey. She is the parent of two sons who have autism and ADHD. Angela is Special Needs Jungle's Mental Health Editor
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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… Read more »

Angela Watts Kelly

Thank you for sharing and I am sad to read it is another story of failure for our young people and their families. Have you heard of SEAP, http://www.SEAP.org.uk? they may be able to offer you some support.

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… Read more »

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?

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… Read more »

Eddie

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… Read more »

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… Read more »

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 http://www.SEAP.org.uk. Good luck

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… Read more »

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?

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.

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… Read more »

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… Read more »

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… Read more »

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… Read more »

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… Read more »

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 🙁

Angela Watts Kelly

How did you get on? Did you get a referral in the end?

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,… Read more »

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… Read more »

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.

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… Read more »

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… Read more »

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… Read more »

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… Read more »