Child & Adolescent Mental Health Services in the UK – Fit for Purpose?
21st June 2019
Over the years I have come across many stories of patients being let down by the poor mental health services in the UK. It is good to know that mental heath is now a top priority for the NHS because if we ignore it, the problems will be much worse. There are however still cases of children waiting 5 years for an autism assessment, or 3 years for a CAMHS assessment. Many of these cases are then subject to triage and it can be a further considerable length of time before any form of treatment is instigated.
I feel like we are failing this generation, I do not have any solution and I don’t think that the promised investment will even make a considerable difference. I would love to hear your thoughts and any ideas that you may have…
Posted in: Health Politics by Dr Tim Ubhi
My knowledge from my own experience and that of others referred to CAMHS in Edinburgh is that if the child is diagnosed at an early age the help all falls into place. Should your child be referred for ASD diagnosis from around age 9 upwards then there’s a very good chance the child will be dismissed and often CAMHS looks to blame the parents for their parenting skills. Those who can afford to have a private specialist often find CAMHS misdiagnosed their child. Those who can’t afford to pay often end up with their child failing at school and carrying their problems into adulthood where they are then stuck in the adult mental health system for a long time. This could be avoided but one of the main problems is OHPs don’t really listen to parents when they ask for help.
CAMHS told us to phone back if things got any worse.... this was when my son had a large shard of glass in his hand screaming that he wanted to die. It was almost a daily call where I'd beg and plead for help. It took such a long time, so many phone-calls, letters, meetings but eventually CAMHS did get involved. However, they nearly destroyed my son. The intervention and techniques they literally forced upon us were inhumane. Unfortunately, PANS brings with it such a range of mental health symptoms, of varying severity, all of which wax and wan, that it's no wonder CAMHS, with their limited resources and lack of understanding, fail to help these children. So is CAMHS fit for purpose? Good question Tim. I think it could be. However, we need to remember this: A child doesn't suddenly develop a range of autistic traits overnight, they don't suddenly catch pathological demand avoidance, stop eating out of the blue, start having tics and experience hallucinations on this way. What if, when the GP suspects autism, instead of a referral to CAMHS, the default response is a course of antibiotics, along with a symptom monitoring chart? Some GPs will argue about antibiotics resistance, say it's too risky, too costly, there's no obvious infection, we've run no tests. However, surely, it's TOO much of a risk NOT to prescribe? Do this for all kids on the waiting list with suspected autism and see what happens. Then CAMHS maybe, just maybe, prove fit for purpose.
My son was seen within a few days as an urgent referral from hospital where he had been admitted with very severe sudden symptoms but from then on our experience was appalling. I think the psychiatrist was doing her best but she diagnosed him with ASD and blamed his symptoms on stress! He was given 4 drugs - 2 antipsychotics an SSRI and a sleeping tablet and offered no therapy or support of any kind - I asked about PANS and was told it couldn’t be that because he had no tics...! Two years of misery followed and then we saw a neurologist who suspected PANS treated him with antibiotics and ALL of his symptoms went away! He is now fit, well and completely drug free - all for the want of an antibiotic! There definitely needs to be a huge shake up in children’s mental health and much more collaboration between ‘physical’ and ‘mental’ health!
I showed CAMHs PANDAS 8 years ago when my son became horrifically I'll. He had all the symptoms. I was ignored. Only now, with major research on my behalf and producing the evidence through his medical records is someone listening, but he is now 20 and there is no service for him even though his onset was at the age if 11. CAMHs must take this seriously, without treatment our children become adults stuck in the mental health system with no health professionals to treat them. His whole teenage life and now early adult life lost...if only someone had investigated, if only there was someone to take his case now that he is an adult. Instead we have a continued fight to find someone who our health board can refer to.
Janice, have you considered pans?
We’ve been referred to Cahms for my son a few times but got discharged immediately as he was not severe enough, even when he was terrified of being near paper which made school almost impossible. When he had a massive breakdown they finally had to take him on. Took months to see anyone with no help or advise from anyone. Eventually we saw someone over the period of about 6 months. They did not know how to help him as he was so severe and could not leave his bedroom. They then discharged him after a year even though symptoms were and are a million times worse than when we first saw them, he has no life, has barely been able to leave the house in 18 months, water ‘hurts’ him so he has been able to bath and shower for a year, hasn’t been able to access education in 18 months, regularly thinks he’s poisoned if he has a slight mark on his finger, tics, ocd, insomnia, severe sensory problems, anxiety and we’ve been left on our own. Before they discharged him they told my GP that he puts on his symptoms ‘to give him a function within the family’, as if he’s putting this on! He’s lost his whole life and we are living in a nightmare and they think it’s all put on. I now don’t want Cahms anywhere near my son and my family which is not how it should be. My son has now been diagnosed with PANS after me spending all my time researching and fighting for him. Cahms need to understand how infection and virus etc can cause neurological problems, and how to help these children or who to refer then to. And they need to stop blaming the family or the child for putting it on. We’re already living a nightmare without them making it worse.
My daughter has been under CAMHS for 8 long years for OCD, Anxiety and what they call Depressive Disorder - all they’ve done is medicate, medicate, medicate until she’s on a whole pile of pills daily. They will not listen to my concerns that all of her self harm incidences and overdoses have been since Sertraline! Luckily we discovered PANS last year and had a diagnosis in November, things are now on the up - CAMHS still say it’s probably PANS and ‘something’ Despite me highlighting every single PANS symptom in their letters. It’s dangerous the way they work and the delays are unacceptable. Children are being misdiagnosed so often now and so many are turning to self harm. It’s heartbreaking.
Whilst my daughter was seen within 4 weeks of developing significant OCD. They don’t seem to know what to do with her. She isn’t able to access the traditional support and their new recommendation is to teach my husband and I how to live life whilst she lives a life full of routines. Before this occurred she was a fully independent, caring teenager excelling at school and overnight her life changed. The service is not fit for purpose, there is a lack of working collegiatly and looking out with specialisms for answers/next steps.
My just turned 5 years old son had initial assessment for possible adhd with camhs then we long wait for the next stage . He suddenly overnight developed what seemed like Tourette’s and alarming hallucinations with rushing into road saying he “would kill himself “ I phoned Camhs for urgent intervention 3 separate times , logged as emergency . It took 6 weeks to get a call . By that time we had to do our own research , seek private health and a diagnosis of PANs was made. I don’t think I’ll ever get over the helpless , desperation and let down of no one coming back to me.
They’re absolutely unfit and disgraceful, not educated in Pans & Pandas and putting children and young people at risk
My daughter took an overdose so was assessed by CAMHS. They decided that it wasn't serious enough and that they didn't need to see her. 5 months later she took a Paracetamol overdose.
That is very sad to be reading of the long waits for children to be assessed. I have a young son who became unwell quite suddenly with restrictive eating, weight loss and ocd. This happened in November last year. To see a child suffering in this way is horrendous. Things need to be done to improve the services for children's mental health.