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CAMHS, complaint, autism, etc

43 replies

fleshmarketclose · 10/03/2019 10:31

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?

OP posts:
OhTheRoses · 29/05/2019 21:55

PaddyF0dder, regrettably I can only speak as I found: lost phone numbers, lack of information, untruths in letters at worst, disingenuousness at best. I was told by a CAMHS nurse that my dd was too old at 17 to be diagnosed with ADHD. The message delivered in a patronising tone.

There was no clarity, no evidence of competence and a lot of messing a young person around and also multiple assessments to backside cover when what I was told would happen didn't happen.

Commissioners decide how the overall budget it spent and beneath them MH Trust CEOs. The system is designed not to provide support for young people.

My dd didn't have family issues or "problems". She developed anxiety and depression, due to coping with ADHD/ADD, they are often co-morbidities. She was driven to cutting with razor blades and taking small overdoses.

The CAMHS system did nothing to help her and there was nothing available for me to facilitate safe care for her. CAMHS couldn't help with a private referral that would have secured support for her because they didn't know outcomes but it was acceptable to them to tell me to do what they couldn't do because they didn't regard it as safe. Confused.

My dd got the support she needed because we could appoint a consultant psychiatrist privately. Someone who was intellectually able to make the connection with the treatable neuro-developmental disability from which dd was suffering. If within CAMHS dd didn't meet the threshold to be seen by somebody better qualified than a nurse who thought 17 year olds were too old to be diagnosed with ADHD one can only wonder where she would be now.

If the system is underfunded and under resourced then I'd have thought those within it would be working very hard, but no, where I live at 9.15 the CAMHS offices were locked because the staff wete late. What a culture!

The standards I saw were shocking and they were deceitful especially upon responses to a formal complaint - it took a very long time until the ceo actually wrote and apologised for the disappointing and poor standard of service received and acknowledged it should have been better. By which time several months had passed and dd had been diagnosed by then, privately, and had turned the corner.

Whilst some of this maybe about resources far too much of it is about poor cultures and working practices. And it needs to stop.

CAMHS isn't delivered free, like all NHS Services it is delivered free at the point of delivery. My tax return now breaks down where my money is spent. There is one slice for the NHS to whom I pay thousands. There is no breakdown within that. When one of my loved ones needed care, it was not available. Most tragically, not one person at the CAMHS team I dealt with cared and neither did the PALS team or the Director of Children's Services.

My daughter recovered because we could secure high quality specialist care. Not because of CAMHS who served only to make a bad situation worse and far harder than it needed to. There was a culture of excuses and utter sloppiness. Most interestingly within a few days of contacting my MP which I did twice, services miraculously became available to be offered when they hadn't been before despite call after call and letter after letter.

The system may well be an under resourced mess but there are many highly paid ceo's and directors at many trusts who are prepared to take very high salaries for pretending all is well and covering up backlogs. Perhaps if those who are supposed to care had made more noise and risked their dainty necks a little, a little more funding might have been directed to CAMHS.

Ultimately, Paddy, I didn't secure what dd needed from CAMHS so fear not. I secured expert, psychiatric support and diagnosis for her and the therapy she required privately.

Enterthewolves · 29/05/2019 22:03

Honestly @PaddyF0dder if I worked for CAHMS and someone told me that was their experience of my service I wouldn’t be saying ‘Shame on you’ - I’d be saying ‘Shame on us’ and trying to work out what (if anything) I could do as a practitioner to ensure other people didn’t have that experience. If you’ve lost your ability to be compassionate and recognise that @OhTheRoses criticisms come from being traumatised by a system that was unable to deal with her child’s complexities due to its poor funding and rigidity it might be time for you to look for another job.

Lougle · 29/05/2019 22:29

I don't know the intricacies of where things are going wrong in CAMHS, but DD2 waited 2 years on the CAMHS waiting list for her ASD diagnosis, and 18 months of that was after we had been told that her worker was 100% sure she had ASD, but we'd have to wait a year for a formal assessment.

CAMHS became so overwhelmed that they occasionally did 'safety screening' (phoning parents to ask if they were self-harming/ a risk to others) but admitted the list basically wasn't moving.

When my letter came from Psicon, an independent non-profit organisation, to say that CAMHS were outsourcing, pleasewe'd get an appointment date within 8 weeks, but please be patient with the long queue, I was very sceptical. But, 2 weeks after submitting a very short questionnaire, we were phoned and were given an appointment for the end of that week. So 4 weeks in total. DD2 had two appointments, one week apart, and was given her diagnosis. Her report came 6 weeks later, job done.

OhTheRoses · 30/05/2019 06:58

I think we may be in the same County Lougle. When Healthwatch and the local council brought the mess into the public eye, there was an independent investigation and Psicon were brought in to deal with the backlog relating to the BEN pathway.

I was gobsmacked when CAMHS here was given good recently by the CQC. Although there was commentary about inconsistency between teams. The noise has died down locally and they were due to be recommissioned in March 2019. I suspect they haven't.

Lougle · 30/05/2019 08:14

I'm in Hants, OhTheRoses.

EnglishRose1320 · 31/05/2019 09:18

Yes again I have been let down by Cahms, my son was technically a 'top priority' their words and I would hear from them as soon as the bank holiday was over, Tuesday came and went, I called them on Wednesday, promised a call back at 3- email sent to confirm, two days later and I'm still waiting, another day of chasing for me. Couldn't chase yesterday because my son is so ill I was with him nearly the whole time and he freaks out if I call cahms in his hearing.

Punxsutawney · 31/05/2019 15:24

EnglishRose, hope they get back to you today. You must be beyond frustrated with it all.

stucknoue · 31/05/2019 15:37

I think camhs is quite different depending on where you are. Here there's a teenage asd outreach worker who either sees them in a community clinic, schools or home as needed, she manages medication, provides referrals to talk therapy and meets monthly with them (all in first name basis). Dd was barely attending classes (she went to school and essentially hid in a cupboard, albeit one with a desk and laptop) but thanks to this she got through GCSEs and a levels. It's funded by our ccg so only kids in the city can access this service (camhs straddles the city and county). These inconsistencies are so bad, teens especially girls with asd struggle with crippling anxiety which is different to non asd teens.

That said Prozac made a huge differences conjunction with her specialist, she's since come off it.

EnglishRose1320 · 31/05/2019 20:52

Stucknoue that sounds fantastic, our cahms have little to no understanding of ASD and even optimistically asked me once if I thought the ASD team could help them- our county doesn't have an ASD team, you'd think cahms would know that.

After much chasing today cahms managed to call me twice today! In theory the emergency psychiatrist slot on Monday should be used to discuss my son's case, here's hoping.

OhTheRoses · 31/05/2019 21:47

Oh positive vibes English. Do remember my mantra. "After every connection with CAMHS it is essential to scribe a detailed note setting out everything they have said they will do, noting you reiterated it in the meeting and they agreed with your understanding" that note MUST be sent in a way that secures an irrefutable audit trail. I found Special Delivery worked best with a copy to the CEO and MP.

Parents shouldn't have to resort to this but needs must. Good luck.

EnglishRose1320 · 31/05/2019 21:50

Ohtheroses- every phone call I've had today I've requested an email confirmation of the conversation. The worker we have now is lovely and really does care he is just massively over worked, however I can't let that get in the way of the crucial care my son needs so am having to be firmer and more pushy than I am in day to day life normally.

OhTheRoses · 31/05/2019 22:08

English you sound lovely but you mustn't let the onus be on them to confirm. Our CAMHS team didn't have an email address for the public so communications went like this.

Dear Nurse

Thank you for speaking with me today. We agreed that the following steps wojld be taken:

Step 1
Step 2 etc

I look forward to receiving confirmation that we will hear details of dd's next apt with xx within five working days of this letter.

If you disagree with what I have said I shall be grateful if you will please contact me no later than clise of business on (10 working days hence(.

I look forward to hearing from you no later than. Ideally I woukd welcome the opportunity to discuss my child's care with a suitably qualified doctor.

Yours sincerely

Mrs English

Cc: Trust CEO
Constituency MP
LA Head of Children's Services

Details on-line

Letter to MP

Dear Mr/Ms/Mrs

Please find enclosed a copy of a letter addressed to x at CAMHS. I have teleponed them repeatedly and had little response and appointments have not been forthcoming.

I shall be grateful if you could intervene on my behalf to ensure my child rdceives thd nhs care to which he/she is entitled and to ensure no harm comes to my child due to lack of appropriate requested and agreed interventions.

I look forward to hearing from you andcwoukd welcome a mutually convenient appojntment to discuss the difficulties I have encountered with CAMHS which have been to the detriment of my child.

I look forward to hearing from you and thank you for your anticipated assistance.
Ys
English

CC: MH Trust CEO

You must send everything registered. If there is no audit trail, imo the Trust folk deny receipt.

Good Luck

OhTheRoses · 31/05/2019 22:11

Apols for typos. On phone and in bed x Flowers

StatA123 · 28/01/2022 16:58

So very your going through all this. Cahms isent fit for purpose they don't help to diagnose children not mu son anyway always fobbing me off saying he don't meet the criteria when I know he does and saying going to his school to discuss them. I rang cahms back up today and gave her a piece of my mind. Now I asked the school to refer him back for autism ocd and sensory needs. My son suffering with this and all I want is a diagnosis for him so I know what looking at to help him with it

StatA123 · 28/01/2022 17:00

Oh jesus you work on cahms it's you that should be ashamed of yourself you don't help parents to diagnose there children you instead fob them off with a pathetic excuse so no shame on you

StatA123 · 28/01/2022 17:02

I wish to complain to cahms as they have let my son down yet again always passing him from one department to the next he's suffering in silence cause of cahms there not fit for purpose

CorrBlimeyGG · 28/01/2022 17:04

@stata123 This thread is from 2019. Do you want to start a thread about your own situation?

StatA123 · 29/01/2022 08:37

Yes

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