CAMHS, complaint, autism, etc

[fleshmarketclose]

On Tuesday I have the head of CAMHS coming here for a meeting to dissuade me from making a written formal complaint I imagine seeing as I got no response until I did threaten to.
It's a bit of a saga but dd is 16 diagnosed with autism aged two. October 17 school referred to CAMHS for anxiety and increasing absence from school, it was refused as not meeting criteria. Referred again November 17 and refused again. GP referred in December 17 using the necessary buzz words and referral accepted. Dd by then completely out of school and not leaving house.
Appointment offered May 18 as not meeting criteria for immediate help but pestering by me and school resulted in appointment end of March 2018. I went alone as dd in no state to leave the house, said at first appointment dd's anxiety is so high we need medication before any attempt at therapy and any therapy has to be autism aware and specific hopefully as dd's autism is moderate to severe.
CAMHS worker says no not possible dd has to fail at therapies before being referred to someone who can help and so started home visits which were never going to work as dd's anxiety too high and therapy offered didn't take into account the autism.
December 2018 I get a letter stating that CAMHS input was only to be short term and CAMHS worker would only be seeing dd once or twice more. I may have been slightly annoyed by that and informed CAMHS worker that now I had got my compensation from LEA for their failings I was ready to start on CAMHS.
Dd had been out of school a year by then, still not leaving the house anxiety still very high and I found it incredulous that they intended to discharge her with no progress made whatsoever.
Funnily enough there was a change of heart, CAMHS worker referred dd's case to team meeting and in February psychiatrist came to see dd at home and prescribed sertraline and LD CAMHS came to see dd and we talked about what was needed to be done. I was finally feeling positive that now we could start getting the help dd needed.
Then CAMHS worker called, dd couldn't have the support she needed and only offered by LD CAMHS as her IQ is too high but they weren't going to discharge her instead we were to persevere with the same therapies that hadn't worked in nine months instead.
Funnily enough I wasn't happy at that and so contacted PALS who said head of CAMHS would call within 48 hours. Obviously they didn't so emailed PALS explaining I was now ready to make a formal written complaint. Within the hour head of CAMHS called and has arranged to come here to discuss my complaint on Tuesday.
I want dd to have therapy that meets her needs that is seemingly only offered by LD CAMHS but she doesn't meet the IQ criteria so how can I get that? I don't mind complaining but really all I want is a therapy that will help dd but if criteria are so rigid how do I get past that? Any thoughts?

In my experience with CAMHS you have to follow up every exchange in writing confirming what has been agreed, what is needed, note in writing where offers are inadequate and demonstrate with evidence where they do not meet what is published on their website.

Involving the local MP also helps.

Shocking service where a great deal of resource is spent on avoiding meeting needs annd jystifying their poor decisions when providing effective care woukd have taken fewer resources and would have supported the young person's pitential and development.

Good luck. Stand firm.

Thank you I'm ready to take no prisoners on Tuesday. Your post is absolutely spot on dd has now had twelve months of input with zero progress, it's almost eighteen months since school asked CAMHS to see her, she is no better than she was eighteen months ago if anything she is worse in many ways. She was predicted top grades at GCSE but of course hasn't been in school for almost all of year ten and none of year eleven. She has left the house on fewer than ten occasions in the last fifteen months and yet we have a CAMHS worker with no understanding of autism and they expect me to put up with that indefinitely rather than give the support they know she needs. Are they wanting us to pass time until they can dump her on adult services because I can't understand the reasoning at all but the consequences have been huge for dd.

Hope your meeting goes/went well. Unfortunately nothing profound to offer but similarly disappointing response from services with 17 year old ASD and ADHD. More effort seems to go into gatekeeping kids out and there is absolutely no coordination across services or holistic assessment. You sound resilient and tenacious, hopefully that will help things progress for your daughter. Just so you know your not alone.

As far as children's mental-health services are concerned, we are a third-world country. Totally agree that CAMHS/EWMHS management seem to spend all their effort keeping people out of service in order to massage their performance targets, which makes management look good, but covers up the shocking inadequacy of the service as far as the public and politicians are concerned. In our area, they actively discriminate against Autistic children by stating that any symptoms of depression or anxiety are in fact caused by ASD, and therefore they cannot admit them, despite the fact that there is no clinical basis for this, and it contravenes not only NICE guidelines, but also the UN convention on the rights of persons with disabilities. It is so shocking that their official policy is to discriminate against vulnerable kids, and mislead service users. In our case, even when we did eventually manage to get an appointment after several years of pleading and multiple referrals from teachers and health professionals , the clinician was so disorganised, patronising and incompetent, he ended up making our son's problems worse. This service is a national disgrace. Write to your MP, make a formal complaint, and get some good self-help books.

@fleshmarketclose how did it go?

I agree the system and the dishonesty within it is a disgrace. Sod Brexit, there should be a CAMHS march and demo. I'd do it naked if it drew attention to it.

What really annoys is that CCGs know, GP's know, paediatricians know. What do they say about it? NOTHING. A big fat nothing because to say anything might expose a bit of arse and they like those covered.

Actually perhaps it should be a bare arsed march to get attn to the amount of arse covering that goes on!

There is a charity called young minds which seems to be some campaigning about this. See this article: specialneedsjungle.com/childrens-mental-health-week-experience-camhs-nearly-broke-us/. There is also some good discussion in the comments section.

I used to work in CAMHS. They are so poorly resourced and overwhelmed with referrals they have to make these arbitrary and awful thresholds because otherwise there'd be 4 year waiting lists. In no way does this help you or the fact that your daughter is being discriminated against.

I would definitely make a formal complaint and involve your MP. The more people complain and also involve politicians the more likely it is that some funding will be forthcoming for families like yours. Good luck.

But if they allowed the four year waiting list to develop, rather than masking the problem, and cavorting with deceit, something would have been done much sooner.

That is precisely why I have zero respect for those who work in CAMHS. They have and are complicit in the deceit and where I live whining about how hard they work when they aren't even available 9 to 5. Rather 9.15 - 4.45 because they arrive late and pack up early.

Do you really not see that the deceit is a problem. They wrote to my GP sayimg case closed because mum had refused an intervention. The mother, Mrs Roses, had she been respected enough to be afforded the courtesy of a title (like camhs people and social workers) refused an intervention that was inappropriate and inadequate and would have made her daughter worse. Then refused to negotiate an alternative. One response to parent; quite another in writing.

Only the most twisted and uncaring of individuals would do that. It is not the conduct of decent human beings. Please don't flannel it's because caring people are under pressure. It's because people who should care and be professional don't give a jot about anything except knocking off before 5pm. It is absolutely disgusting and the present sulituation cpuld not prevail if those in it gave the tiniest damn or were preparedbto do anythimg but the bare minimum.

It is not carimg or professional to continually turn young people away and balme others for it. It is certainly not professional to tell lies.

I appreciate that the service is underfunded and overstretched, but that does not excuse the lack of transparency, or the discrimination against people with disabilities. I could understand if CAMHS triaged based on need, and told the truth and said "we cannot treat your son in the foreseeable future because we have too many more urgent cases to deal with". Instead that say "We are not going to treat your son because he is autistic". Of course, they don't actually come out and say it plain language- they say something like "Your son's symptoms are due to his pre-existing ASD diagnosis, and not specifically to do with mental-wellbeing", which is just bullshit. This only serves to a) massage the figures so that targets can can be met; and b) confuse and mislead service users into thinking that they don't need to get treatment for their mental-illness. Whoever thought up this policy was clearly in a toxic work-environment managed by target-obsessed bean-counters.

Good Panorama documentary on the systemic problems with CAMHS here:

www.bbc.co.uk/iplayer/episode/b0blqkd0/panorama-kids-in-crisis

Eye opening documentary. Our dd got the help she needed because we had £6,500 to spend on it. It took me 4 months to get up to speed to seek it out. (I am resilient, well educated and well off). My GP and CAMHS both told me to get her a therapist off the internet. They could recommend neither a therapist nor a psychiatrist because they didn't know outcomes. After an od (one small one) when the local hospital went into overdrive and had £1000 to spend on an overnight admission and 1:1 MH nurse (who could have secured a bit part in "Prisoner Cell Block H) pending a CAMHS assessment (when a mh assessment was available in A&E but the ill trained staff didn't know what was available in their own hospital - but a cowbag of a nurse yelled across the dept that I was obstructing my dd's care and causing a safeguarding issue when I said we were leaving after she'd been assessed as fit to leave and the hospital had disregarded the MH Act on several levels, but couldn't get their act together to free a bed and facilitate discharge 8.5 hours in, CAMHS eventually provided 8 counselljng sessions three months after they said they would. After the first session dd's case was closed. Nobody has told me how they knew the outcome before closing her case.

We live in Surrey. Children's Services are under investigation due to being inadequate. Surrey & Borders were given £2.3m the year they told me to get a therapist off the internet and soent it on an extra layer if bureaucracy rather than on actual MH care, which instead they chose to subcontract to local charities. CAMHS here has now been reviewed due to its inadequacy.

The issues are as much about incompetence and ingrained mismanagement and a culture of excuses as they are about lack if resources. I can still hearthe unhelpful and incompetent CAMHS nurse telling me dd was too old to be diagnosed with ADHD. That private diagnosis turned dd around. That same nurse told me dd would receive therapy in a few weeks over the sumner holidays and then denied saying it. Presumably because she thought I was just another thick and scummy parent - she certainly did not speak to me as though I had a brain cell, let alone three to rub together. And yet she wasn't even well trained or bright enough to know that yes a 17 year old can be diagnosed with ADHD.

The system is an absolute disgrace and equally the people in it are every bit as disgraceful. If we hadn't had £6,500 to spend on dd's care I have no doubt the state would have ended up spending £60k on in-patient care.

It is a national disgrace.

We are about to embark on a course of CBT with a private-sector clinical psychologist. Not ideal as they are 100 miles away, but we have finally come to realise that EWMHS/CAMHS is simply not fit for purpose after wasting four-years either on waiting-lists or being seen by charlatans. We have similar experience that other health-care professionals such as GPs are well-aware of the problems with CAMHS, and have basically given up on them.

My advice if your child is suffering from mental-health is not to trust anything that CAMHS says. If you can beg, borrow or steal the money then go to a private clinical psychologist or psychiatrist as soon as you can. If left untreated, mental-health problems become worse, and become progressively harder to treat over time, and then you are left with an unmanageable life-threatening crisis.

Beware that even if CAMHS do finally admit your child for therapy they are just as likely to make it worse than better, and are very likely to blame you as a parent for your child's poor mental-health without offering any constructive advice.

I hope this is ok for me to add, but would any of you be interested in sharing your stories with Mind? I work in the Mind fundraising team, and we are going to be focusing on Children and Young People for our Christmas appeal. In particular I'm really keen to speak to anyone whose child has been let down by CAMHS. Your story would feature in our mailing to supporters in November, as well as supporting digital fundraising e.g. by email, social media and Mind's website.

If you would prefer to remain anonymous, that's not a problem. If this sounds like something you might like to get involved in, please email me at [email protected]

Certainly would. Will be in touch.

Thanks so much - I look forward to hearing from you.

louisaatmind - I am a CAMHS staff member and if you would like some balance for your article I am more than happy to speak to you too.

My son's deputy head told us that in our area the threshold for a camhs referral is two suicide attempts. One would not be enough to trigger any help.

I don't understand why Camhs doesn't have clear, consistent referral systems. I am a senco and a child I work with who has asd is supported brilliantly for her mental health because she was lucky enough to get the right practitioner who sees her regularly, communicates with me regularly and responds to any crisis immediately. I've had other children in crisis sent away after a quick assessment and told to take up a sport. It's very very inconsistent. Early intervention is so important but it's just not happening. 2 suicide attempts before accepting a referral???

I'm so sorry you've been through this.

Am I the only person who is sick and fed up of people being so critical of the staff who work in CAMHS, when it's actually the underfunding of the service that has caused such a mess with the service?
What we now have is a perfect storm. Mental health is now at the very forefront of children's health and education. And rightly so. So what we have ended up with is people like me, a Senco in a primary school with 50% SEN, referring children to CAMHS / Healthy Young Minds for assessment knowing that unless the child has expressedly stated that they wish to kill themselves then they could be waiting months for their first appointment. GPs, schools and parents are frustrated. But I know that it's the system, not the staff that's failing.
By all means, where the service has fallen short of realistic expectations, then use the correct system to make a complaint. But really, threatening to claim compensation is just ridiculous. As is claiming compensation from vastly underfunded LAs. That doesn't solve anything, in fact it makes things worse for everyone.
The more people criticise the staff in a very stressful occupation, the more those staff will leave and there will be fewer people willing to work in that sector. It becomes a self fulfilling prophecy.
One other very small point - this is a free service. It might be imperfect, but at least it's not costing users £££££ to access it.

Soontobe60- a child expressing suicidal thoughts isn't actually always enough to get seen and often the Cahms practitioners are the ones letting them down not just the fact they are horrendously under funded and under staffed. I had complete sympathy for the Cahms worker who openly told me the system was broken and was honest about the struggles. Others I have dealt with have made promises in writing that they haven't stuck to, have missed crucial meetings, only cancelling half an hour before and have given my son completely inappropriate help so it's not always just the system.
Just because a service is free doesn't mean we should happily accept any old care without complaint. I have lost over 2years of my life to simply keeping my child alive and he still has no care plan on place, he has been waiting for an emergency admission for a year now. I happily gave up my job to care for him, but I feel like I am just sitting here watching his disappear. So I think you are right it's not always about the Cahms workers but quote often it is.

The underfunding has caused a huge mess of the service and this is where the anger should be directed.

But when you are a parent of a child who is unable to leave the house and is real risk of suicide you use everything within your power to get them support. We live in a world where threatening legal action might be the ONLY way you can get your child access to drugs that prevent them from killing themselves.

I can vouch for the fact that every member of CAMHS staff I have dealt with has been lovely, professional, helpful and sorry they work for a service that doesn't function. The clinical psychologist that diagnosed our son with ASD also referred him to a group therapy of managing emotions. She had tears in her eyes saying its a long wait but its all that we can offer him. We believe its an 18 months waiting list.

It's more than flawed I think it's barely fit for purpose. I agree that it's not the practioners but the system. The government has invested money in trailblazer areas which will mean improvements in just 25% of areas by 2022. Meanwhile the rest of the country is left with a broken system and mental health problems among young people increasing at a pace that schools and the services we currently have, absolutely cannot handle.

If there was an outbreak of measles affecting the same number of kids there would be an uproar and money would be thrown at it.

Ok I suppose for those who can afford to go private but what about those who can't who are most likely to develop a mental health problem because they have more risk factors.

EngishRose sounds like you have been through a very difficult time. I hope he gets the support he needs soon.

We are fortunate that Ds just has low mood. One of the reasons for this is undiagnosed ASD. He has had no support at school until recently and he is nearly 15. He has been waiting a year for a speech and language assessment. When I talked to the deputy head last week she explained that there is no mental health support for children like Ds.

Ots not just the underfunding - as I said on a previous thread : underfunding means you can't provide the service immediately , crap attitude and training means you won't tell me, might give me misinformation and will just leave us in the dark.

@OhTheRoses

I work in CAMHS.

Given you regard people like me (to use your words) twisted, uncaring, deceitful people for whom you have no respect, perhaps it’s best you don’t deal with us?

I would never describe a diverse group of people in such dehumanising terms. Shame on you.