'The hellish process of dealing with CAMHS to get help for my son's mental health issues is like being trapped in an abusive game of Heads We Win, Tails You Lose'
A Bishop's Stortford mother writes anonymously about her three-year battle with Herts CAMHS (Child and Adolescent Mental Health Service) to get help for her son's mental health issues...
The aggressively bright paint of the A&E waiting room is a jarring backdrop for screaming, bleeding children and a not noticeably unwell toddler continually crashing into chairs till I want to scream, too.
My patience is stretched thin by the fact of having already driven 75 miles since 8am today and spent four hours waiting at a different hospital until they told me they couldn't help and sent us here, another hour’s drive away, to wait for another five hours.
Ironically, the hard-to-locate child mental health team we are attempting to see, and with whom my child has been registered as a patient for the last four months, are actually based less than five minutes’ drive from our home. But the only way we can see them – having phoned their 'crisis line' to report that we are in crisis – is by showing up at A&E and asking them to phone EXACTLY THE SAME CRISIS LINE I phoned last night.
Welcome to the lunatic world of the Child and Adolescent Mental Health Service, CAMHS...
I doubt I could have carried on if I’d known when I wrote the above in 2018 that, despite the promises made to me by CAMHS, we’d still be waiting, two years later, for CAMHS to offer any treatment.
In his many months of being a Tier 3 (of 4, where 4 is residential care) patient in the CAMHS system, my son never had even ONE actual appointment for any actual treatment. Instead, we traipsed back and forth to stressful ‘assessments’, often at clinics an hour’s drive away, at short notice and each time with a different CAMHS ‘practitioner’.
As events wore on, the assessment notes were increasingly fictionalised in order to ‘prove’ that there was in fact nothing wrong and therefore nothing that CAMHS could do to help.
I now understand that the primary function and aim of CAMHS is not, as you probably naively expect, to support and treat children with mental health (MH) problems, but instead to find a way to manage them off the long waiting lists in order not to have to provide treatment.
Here are some “You’re off the waiting list” excuses CAMHS gave to me and to friends I’ve made throughout this hellish process:
- your child’s suicide attempt wasn’t serious enough
- it’s your fault your child has MH issues
- your child might be autistic so their depression isn’t treatable
- your child is self-harming for attention
- your child doesn’t want to be helped
- you seem hostile
- you’ve already tried everything we’d recommend
- we can’t offer MH support, ask your school instead.
It’s a system in which it’s so unbelievably difficult to get any help that, in the frankly miraculous event you even get a successful referral from your GP (most requests are rejected outright), you will, when faced with the utter incompetence and what feels like malicious uselessness that is CAMHS, eventually give up hope and stop asking.
It’s akin to taking your child to hospital with a broken leg and the doctor saying, “If you’d been a better parent this wouldn’t have happened, but if it’s not better in a year’s time and he hasn’t died of it, we’ll put him on a waiting list for treatment”.
If you persist, and especially if you make a complaint (in my case including to the health authority and to my MP), you’re likely to end up being threatened with a social services investigation if you don’t drop it. Truly, if you’re not mad before you see CAMHS, you will be by the time you’re finished with them.
I was blissfully clueless back in 2017, when my GP agreed to refer my son, suffering with PTSD (post traumatic stress disorder), to CAMHS. In practice, this meant a long wait for a Tier 1 review (a gatekeeping service in which they, essentially, ask you if you’ve tried being a better parent), then a further wait for a Tier 2 appointment (at which they might offer six weeks of CBT (cognitive behavioral therapy), even though that will be useless for any child unwell enough to have made it this far through the system) and then a final wait for a Tier 3 assessment, at which, nearly 12 months after the GP referral, we were told there would be a minimum six months’ wait for an assessment for any actual treatment.
During this last wait, despite help from various professionals paid for privately, my son was deteriorating rapidly, hence our visit to A&E.
Just for a moment stop and imagine how it feels to have a CAMHS practitioner say that they don’t think your child’s self-inflicted injuries are ‘bad enough’ to warrant help. Try again, son, and this time see if you can hurt yourself enough for CAMHS to see you’re not just mucking about.
Imagine how it feels when a CAMHS practitioner finally agrees that your child desperately needs help, but they are overruled by their manager and the assessment notes are mysteriously changed from ‘child desperately needs urgent help’ to ‘no intervention needed’.
Imagine the daily grind of appointments, form-filling, researching and trying to juggle the frequent days when school call you to collect your child because they are screaming, distraught or saying they want to die.
Imagine year upon years in which your child’s headteacher hugs you every few days and tells you you’re an amazing mum because she knows things are desperate and that nobody else is helping you.
Imagine what it’s like to receive more kindness and understanding from the school secretary, who sees you struggling on through your tears every day, than you do from supposed child MH professionals whose only goal is to get you off their list.
Imagine that you’re also trying to hold down a job, parent your other children and run a home.
Imagine how isolating it gets, how you’d avoid friends, avoid answering messages and phone calls, avoid making social plans because they all end up being cancelled at short notice when your ill child needs you.
Imagine constantly staying up till 3am rather than going to bed because you dread the reality of having to deal with your sinking ship all over again the next day.
During this period, my son and I endured a number of ‘assessments’ with CAMHS, which we continued to attend as I assumed, incorrectly, that eventually one of them would yield some treatment options or even just some useful advice.
If I cried, they called me “fraught”. If I didn’t cry, they would note that “the mother is strangely unemotional". We were trapped in an abusive game of Heads We Win, Tails You Lose.
My parenting methods were picked over, my every decision since birth reconsidered with the enviable benefit of hindsight, my version of reality questioned. There was no treatment or advice, ever.
I came to realise that CAMHS practitioners are surprisingly akin to builders, and whatever you’d tried in the past, each new one (because you’d never see the same one twice) would tsk-tsk disapprovingly, effectively saying "What cowboy did this, then?"
I was told that I should have been tougher, or softer, that I should have changed schools, that I should not have changed schools, that I should ignore my child or that I should be more reactive to him...
For what it’s worth, from my current vantage point, I can tell you that what you almost certainly need for a child with severe depression and anxiety is, in fact, many months of weekly sessions with a psychotherapist trained in play therapy. This, of course, is not an option CAMHS offers, so you’ll probably have to take a second job to pay for it.
In a final showdown multi-agency meeting, which took many months and every shred of my own resilience and mental health to organise, against a backdrop of escalating dark threats, CAMHS insisted to a room full of professionals that their records now showed my son had no MH issues and that as long as their records said so, it didn’t matter a jot what the actual reality was (*).
Thankfully, at the point where the CAMHS representative stormed out of this meeting in a metaphorical puff of evil smoke, jaws dropped around the room and the local education authority rallied around to put in place the support my son needed at school, which CAMHS had wilfully blocked for six months.
My son continues to have privately paid for support from a wonderful psychotherapist, and we are blessed with school staff who genuinely care about our family.
I am lucky to have a sort of cockroach survival spirit, but I have learned that people with MH difficulties actually have a kind of strength the rest of us will never really understand. I see my son picking himself up day after day after day, and I see how unbelievably f***ing hard that is, and how much effort it takes not to let it crush him.
We are three years into this journey, and as my fellow parents of kids with MH difficulties will attest, it is tough. Nonetheless, we continue to congratulate ourselves on our, so far, 100% success rate of getting through the day.
(*) Three years on from his initial referral, my son remains on the CAMHS Tier 3 wait list and has still never been offered any treatment.
More by this authorBishop's Stortford Independent reporter