CAHMS - Absolutely Fuming

[BathshebaKnickerStickers]

Sorry, wide awake in the middle of the night because I’m so angry.

My dd - almost 17 - was urgently referred to CAHMS last month because of suicidal feelings and plans.

She had an initial appointment quickly which was an appointment with a very nice nurse to do a background and initial information about how she was feeling and why etc.

She was then posted out an appointment for March.

Sorry, school and the gp both said sorry March is too far away, she needs seen before then, GP intervened and she was due a virtual appointment on Monday afternoon. She was told it wot be done via FaceTime.

She took the afternoon off school so she could be at home for this appointment.

No-one contacted her.

I asked her if she had maybe missed an invitation to a “virtual room” that she had supported to join at her appointment time - no all she had was a text confirming the time - no “joining” link.

No-one contacted her by FaceTime - I’m going to FaceTime someone it’s essentially an outgoing call I make to their number...

No-one phoned her - they have her mobile.

No-one phoned me - they have my mobile

If it was a virtual room that she was supposed to join rather than a FaceTime call, surely when she didn’t jjoin someone should have called - it’s a new system so they must understand that maybe people haven’t used it.

This is a suicidal 16 year old who now has had 2 urgent GP referrals in 6 weeks - the initial one and then this appointment being brought forward.

No joining instructions if it was a virtual room rather than a direct FaceTime call.
No call to her to find out where she was if she had failed to join
No call to me to find out where she was (she was of course sitting at home waiting for the phone to ring.

I am beyond furious. Obviously calling them first thing tomorrow but expecting to be told there is nothing they can do now until mid January or whenever.

Are they so jaded that she is “just another suicidal 16 year old”?

Sorry to hear about your daughter not being well but please don’t have high expectations from this service.
With her being nearly 18 they will also hold out til her birthday. I got told can you not wait for 7 month til your sons 18 (yeah no bother I will just pause his mental health)

I had to diagnose myself after 40 years of poor mental health by looking through psychiatric manuals. When I was sure I knew what I had which was a serious psychiatric condition I should have had treated years ago I finally got the medication and help I needed and am beginning to live a normal life. The only time they intervened was when I had a psychotic episode and I was given the choice of being admitted to a unit or being looked after by a relative. They advised me against going in as they said I'd be overwhelmed by the other people in there. Great. Id advise you to be as proactive as possible if you can afford private counselling do it. Get the GP to start her on some medication. I have little faith in CAMHS any more. I've sorted myself out.

Sorry only used Cahms twice (i'm in Scotland ) and found them next to useless. Paid to see a psychiatrist privately but only found 2 in Scotland who see under 18's as rest were so busy. Means travelling long distance but it did help.Best of luck.

I work for a business that undertakes CAMHS refurbishment, and they are spending millions on the buildings. Does the building really matter that much, when children and young adults are not getting the help they need and deserve?

I’ve called, the very polite lady I spoke too (I was very polite too) is going to speak to the clinician and/or their secretary to find out what happened and call me back

CHAMS is not your only access point - I got my daughter an appointment with a private psychiatrist who recommended a counsellor who she zoomed during lockdown. The counsellor referred us back to the psychiatrist for medication and she prescribed. She then managed to get us referred to CHAMS after two GP referrals had produced nothing. The CHAMS psychiatrist took over her prescription and now we get it from the GP. This whole process took over a year and a half and we are still on the wait list for CHAMS counselling! Now need to find a new private counsellor as DD does not want to go back to the old one and CHAMS are new going to get round to it - also I believe she will only get 6 sessions when they do

16% of nurses in Scotland are mental health nurses. It's the Cinderella service of the nhs, very little funding but expected to do so much. Really hope your daughter gets the helps she needs.

I’m so sorry you’ve had this experience OP. I can’t imagine what you’re going though with your daughter - it must be so worrying and frustrating.

I have heard that this service is very underfunded/staffed. With mental health beds being reduced and most patients being cared for in the community so much of the care falls to families. I have 10 or so years experience in adult mental health system and it’s been frustrating.

Are you able to pay for CBT? It might be a good first line. Are there any free mindfulness/meditation classes in the area to help DD practice clearing her mind to get a break from the thoughts?

Remember A&E is always there - an on duty psychiatrist may see your daughter there. Does your area have a mental health crisis team - find their number (for your peace of mind) so you can call them if you need to. If you have seen a consultant yet get their secretary’s number so that you can leave a message and request a call back from consultant or advice about where to get help. Can your daughter get involved with activities with mind or other mental health charities for young people so she doesn’t feel isolated?

If your daughter is willing to do so and isn’t already I would highly recommend she keeps a mood diary. Then when her appointment comes round she will have some ‘data’ to speak to the psychiatrist/psychologist about. Sometimes mental health diagnoses take a long time and doctors need a longer period to spot a pattern before they can advise on the course of treatment. I know it’s difficult in the mean time.

In my case it was 15 years struggling in the system - then I started using a period tracking app and the issue is very severe PMS! I nearly had a misdiagnosis of bipolar, I spent a lot of time unnecessarily on strong psychiatric drugs which didn’t agree with my body and wish I had done this sooner. Hope to try a new route of treatment soon. No-one in mental health suggested it could be this - so if you or your daughter feel it could be biological keep an open mind about this too.

Hope your daughter feels better OP

Surely the first thing out of your mouth when they called to confirm with you was "how does it work. Do you need her email address? Or do we join a meeting?".

You've even said in your post that you know they dont have her email address. If you knew that, then how were you expecting them to call?

You need to take some responsibility for this. it is on you to check the facts and make sure you're ready. You knew they didnt have her email, yet you sat there waiting for them to contact her gia a video chat? Doesnt make sense.

Good luck today.

I also have a suicidal 16 year old and CAMHs have been dreadful. She was admitted to hospital for 2 nights to keep her safe in February and we have our first face 2 face appointment on Friday!

We saw the crisis team initially and they were supposed to transfer over but it just didn’t happen.

We ended up going private, but because she now has support in place we have to wait even longer and private is costing a lot of money. £200 per half hour with psychiatrist, then the DBT counselling and the cost of the prescriptions.

Sorry that isn’t any help, just offering sympathy really.

How are her energy levels? One thing my daughter was told was to exercise and I do think it has helped, we brought a cheap exercise bike. But it is only possible if she has the energy to do it.

I think they are an entirely fictitious organisation. I'm exhausted by a completely uncaring brick wall that is supposed to help my child.

A little more honesty in the system would be helpful. Absolute clarity about waiting lists and times and a tool kit for parents to help them support their young people.

I know how much tax goes from my salary to the NHS because nowadays it's on my tax statement received annually from HMRC. It isn't broken down on there, therefore I don't expect to hear from commissioners that this pit gets x and this pit gets y and this one z. We don't vote for the commissioners and the commissioners don't have absolute authority over the MH Trusts. There absolutely needs to be greater accountability.

CAHMS has always been crap. Lovely staff but not enough of them or money put into the system. Check out some charities in the area or if you can afford go private

Is there option for online cbt through nhs? It would be sticky plaster but a start

@BathshebaKnickerStickers

Sorry but I'm another one to add to the list that thinks CAMHS is less than fucking useless.

We're going through a similar ordeal, having been screwed over by them completely a few years ago. Never again so am going private this time.

CAMHS are under pressure and underfunded all over.

I really feel as if the service is only there now for families who cannot afford private CBT themselves.

You would be better off paying for it privately if you can. And no, it shouldn’t be like that, but sadly it is at the moment.

DS once missed a call from CAMHS ---- because he'd set his phone not to accept calls from unknown numbers.

Progress OP, good. Keep brave ring away, politely contacting them, until you get somewhere.
Speak to GP today aswell.

@TheLetterZ when dd was under a psychiatrist and recommended medication the GP was happy to prescribe for as long as dd was safety netted. The psychiatrist recommended I do that. Also when she wanted full bloods to check for any underlying conditions she wrote to the GP asking them to do it which they did. There were a couple of specialist ones the GP wouldn't pay for because they weren't routine on NHS and dd was referred to an endocrinologist for that part and BUPA paid.

@BathshebaKnickerStickers it's really important you look after yourself and I wonder if you are employed if your employer has something like an EAP scheme through which you could access some counselling for you quickly. I know it sounds perverse when it's so hard to source it for your dd but you will need every ounce of resilience during this period to be able to support her 100%.

Just as an aside, our dd is 22 now. She will likely always be prone to anxiety and depression but manages it well now together with her ADHD for which she is medicated. She is in her final year at uni and doing very well. Just thought it was worth mentioning from a hope perspective.

The one thing that really sticks in my craw is the pervading insistence of CAMHS practitioners that there must be family issues: poor relationships, poverty, not enough attention, expectations too high or poor boundaries. Well not always. Some yp are stable, secure, loved, at good schools with families who care and because of all that neuro developmental disabilities have gone unnoticed until well into the teen years. The greatest take away message for me is that CAMHS need to automatically stop parent blaming and focus on that which is diagnosable and which doesn't escape the attention of suitably qualified doctors. It is a service that fundamentally has to stop being nurse led and it needs greater direct upward input from parents and their yp to ensure the right information reaches the psychiatrists leading the multidisciplinary team meetings.

@BathshebaKnickerStickers

You could try ringing these. They have a Parents' Helpline.

youngminds.org.uk/

@WhereverIGoddamnLike - they phoned her on her mobile to arrange the appointment - the appointment was brought forward as urgent.

We expected them to phone her on her mobile.

The had that number. They had my number. They didn’t have her email address, they set up the appointments. If they needed her email address to set up the appointment they would have asked her for it. They did not.

Not in Scotland, in the Midlands.

DD1 was in the same position at the start of this year, just turned 16. Our GP encouraged her to contact a charity called Pause who did an initial assessment and referred for counselling. This was carried out weekly over the phone during lockdown. This helped but not enough, so she was put on medication at our request and is doing much better now (5 months later).
She's been diagnosed with OCD and has been referred for ASD assessment as she scored highly on the adult tests the GP ran.

At no point has CAMHS been mentioned though she's probably using some of their services. I've never been involved in any of her appointments as she's over 16.

I've no idea if there's a similar service in Scotland, but at 16/17 she shouldn't be refused medication.

@WhereverIGoddamnLike

Surely the first thing out of your mouth when they called to confirm with you was "how does it work. Do you need her email address? Or do we join a meeting?".

You've even said in your post that you know they dont have her email address. If you knew that, then how were you expecting them to call?

You need to take some responsibility for this. it is on you to check the facts and make sure you're ready. You knew they didnt have her email, yet you sat there waiting for them to contact her gia a video chat? Doesnt make sense.

What crap. They are the service provider. The onus is on them to make sure their patients know how they will be contacted. They are dealing with distressed people. The onus is on them to be clear.

CAMHS are under pressure and underfunded all over

They are also useless. Mental health care has never been well funded and it has become worse - I've seen CAMHS in my area go from barely adequate about 15 years ago to utterly useless in more recent years. However that doesn't map directly onto funding either - organisation and accountability are also an issue. If you run a health service as tens of thousands of mini fiefdoms its not surprising that you get organisational chaos.