What is the point of cahms, who can help my son with his terrible anxiety

[Hadenough91625]

We think my son has adhd/asd (traits of both), been through hell his whole life. Went though cahms age 7 at request of the school for an adhs referral. Cahms only gave 6 weeks of counselling with younger minds and discharged us.
We continued to plod on with great difficulty. He's 15 now and along side his difficulty to concentrate/focus etc he also now has sever anxiety, health anxiety, ocd.

We went to the GP 18 months ago to refer back in to cahms , finally saw them yesterday initial assessment appointment (2nd one he's had)
We were in there for 2 hours , gave huge amount of detail. They were very nice , nodded at the right place , were sympathetic and said he ticks all the boxes and definitely needs help.
Then tell me that other than counselling again that we don't want they won't offer anything else. Can put on adhd pathway which takes years to see anyone and nothing in the meantime. He desperately needs to see a psychiatrist and be put on medications.

I said to them anyone over the age of 18 can go to their GP, tell them they are anxious and be prescribed something there and then. They will also be referred to a mental health team to be assessed by a psychiatrist if needed. Why can my son not receive anything when he suffers from extremely debilitating physical symptoms from the anxiety. Every day he gets worse and there will be untold damage by the time he gets to 18.
It is so frustrating .

Again, I said may not be appropriate. Medication might be indicated but it needs to be assessed. All I am saying is there needs to be an openness to engaging with other methods and I think the OP will need to push them for more help.

I don’t understand why everyone seems to be so combative about this. I was trying to be helpful.

Most CAMHS services are diagnostic for ND conditions and don't offer services after diagnosis apart from medication for ADHD. Waiting time for a diagnosis is very long (multiple years) so go Right to Choose from your GP for a private provider to diagnose - some will also offer meds so do some research in your area. Medications for under 18 are highly regulated under NICE guidelines and should be prescribed along side some other therapy such as DBT groups or Family Therapy etc. CAMHS is extremely under funded and is quickly becoming a Crisis only service in some areas with 3rd sector and Primary Care alongside schools left to provide emotional and therapeutic help. I have worked in CAMHS (now CYPMHS) - Young People instead of Adolescents- for over 20 years and seen the service change drastically over time.

Well l found as the parent of an ND child that therapy did nothing. Whereas anti depressants were a game changer.
And she had loads of therapy. Some paid for, some NHS.
l wish we’d done anti depressants first.

Apologies. It's just so hard as a parent when your child is clearly struggling to function, and you are told that because they are neurodivergent, they won't be offered help.

Eating disorder clinics, psychologists, etc., say that therapy doesn't work with ASD. Then GPs say that they can't help because CAMHS is responsible. CAMHS... I'm not even sure who they accept because I've never met anyone who was accepted without a huge fight. All the white, a parent is seeing their child fade away. Schools then refuse accommodations because the child isn't diagnosed. LAs (illegally) refuse EHCPs because the child isn't under CAMHS.

DD1 had an eating disorder a few years ago. GP referred to CAMHS and paeds. Seen by paeds one day, and CAMHS phoned while we were there. Paeds discharged because CAMHS were involved. CAMHS discharged because paeds were involved. Almost a year later, after bouncing between the GP and dieticians, both suggesting the other could help, I phoned the GP and said "DD1's heart rate is 143 on standing. Her feet and hands are cold and purple, and she feels dizzy. Just checking that's ok." That triggered DD1 being sent to A&E. But I had been begging them for help for a year.

It's just frustration.

Yes I think people become entrenched in their beliefs and prescribing theories and practice and what parents expect has changed over the 3 decades Ive been working with children and families

Back when children were more routinely prescribed AD or anxiety meds, poeople were kicking off about their children being medicated too easily. Gudiance has changed over and over again and will change again. This is merely a discussion forum, not a set in stone thesis or decision making forum.

I would refer for talking therapies and if seriously unwell would refer at 18 to adult secondary care and under 18 to CAMHS. SSRIs carry a higher risk of sudden suicidal ideation in this age group and shouldn't really be started in primary care.

I don’t understand why you’d refuse counselling?

I privately funded absolutely everything for my daughter. Unfortunately it’s the only way to get stuff moving.

Are you completely sure it’s a not an initial 6 week block to get more info and then he could be placed on a waiting list for CBT? That’s what tends to happen in my area, and CBT would likely be recommended for the issues you’re describing. If so, I would jump through the hoops, even if it does seem like a waste of time. I absolutely understand your frustration.

I’m sorry to ask this again but it’s a bolt and braces question which healthcare professionals often feel unable to ask for fear of looking judgey.

What is his routine like? Food, sleep, time outdoors, screens? All of these factors (if negative) are big players in the anxiety epidemic we are seeing at the moment, so before discussing medication etc can you post a bit about his life and possibly we will spot a trigger you haven’t?

If this is true then I genuinely think I will lose my son to suicide. That is the only thing keeping him moving forward that once he reaches the legal adult age he will have access to more treatments.
Therapy doesn't help him as he doesn't listen. He needs medication to remove the anxiety so that he not suffering from panic attacks, dizziness, brain fog and all that comes with it on a daily basis. Only medication will do that, nothing else.

He thrives off routine, he eats well and is very active. He finds keeping busy and active (loves sports) keeps his brain busy and the anxiety at bay.
Once he stops and is alone, especially at bedtime then it all starts.

DD3 finds that going to bed early helps. She gets ready for bed at about 8pm, so that she's in bed by 8.30. Any later and her thoughts start spiralling.

The problem is that there's not a huge amount of evidence that the benefits of medication outweigh the risks at that age. It sounds like he needs intensive talking therapies, sadly also not something the NHS is good at. If you have some spare cash I'd get going on that privately. Beta blockers can be helpful if very physical symptoms of anxiety/panic (fast heart rate etc).

Once he stops and is alone, especially at bedtime then it all starts

That's exactly what a good counsellor could deal with.

If he's 15 now, you've got plenty of time to gently introduce the idea that meds aren't necessarily the whole answer.

Totally agree with this, lifestyle factors are not taking seriously enough,the ND brain needs this more than the average child

OP what do you mean that GPs won't accept private diagnosis?

We had my DS assessed off the back of an request from his teachers. Did so privately and then sent all the outcome letters to the GP to add to his file.

At no point did anyone say that the autism diagnosis wasn't valid because it was private.

I've heard it might not be accepted for ehcp but surely a GP would accept a proper private adhd diagnosis?

Also can't you see a private psychiatrist and have private medication prescriptions? A friend did this for her asd son

So generally speaking he’s ok during the day when occupied and outside? And the anxiety starts at bedtime?

That’s a common trajectory for anxiety. It gets worse as the day goes on.

I was once told by a respected psychiatrist that it’s the opposite - anxiety peaks in the morning, and depression later as the day goes on.

It’s unusual for anxiety to propel you to be busy and face the world, usually the anxiety is rooted in not wanting to interact with the world for whatever reason.

I’m not convinced this is anxiety. Is he unhappy at home? Scared of the dark? Does he have a middle of the night fear which keeps him awake and feeling panicky? Age 8-12 I didn’t sleep until 1am as I had a combination of the above which stopped me from sleeping.

Organic MH issues, ie brain chemistry type MH conditions tend to have their symptoms more acute in the morning (for depression and anxiety)

Behavioural or lifestyle issues or environmental MH conditions tend to show their symptoms more as the day goes on

There will be outliers to this but this is what is generally the case.

Lots of people have a spike in anxiety and worry at bedtime which impacts their sleep.
Sometimes the fear of not being able to sleep ramps this up.
It’s a time when the house is quieter, you’re not busy and active and once you lay down to go to bed all the intrusive thoughts and rumination that you’ve been able to manage all day comes flooding in.

The (unpopular) trick is to find strategies that help you to relax and get your body and your mind ready for sleep. Mindfulness, guided meditation, PMR.

It doesn’t work for everyone but it needs consistency and practise.

Just to echo what @whatasillygooseand @oldclockhave said about ssri’s due to my own experience with them at 18 (seroxat made me feel suicidal, although it’s no longer around), I’d be v reluctant for my teen dd to take anti anxiety medication or antidepressants. Not until all other avenues had been tried first anyway. I’ve struggled so much to get off Citalopram as an adult due to awful withdrawal symptoms, and only managed it once completely when ttc dd. I would personally want to try all other options first due to my own experiences. The issue is how the hell do you get the help on the NHS when services either deny you access or just send you round in circles.

Dd has been taking the contraceptive pill for her acne for the last few months and it’s made her feel increasingly depressed. Before this she always had bad anxiety and some low mood with ASD and ADHD. A lot of it’s directly related to school pressure though. We’re talking about her stopping the pill as there’s been a very striking and obvious correlation with her starting that and getting depressed. She’s reluctant as she doesn’t want the acne to get worse again, but likewise hates feeling so low and her emotions totally out of her control.

So I’m now looking for therapist who can help with talking therapy, and potentially CBT that can be adjusted to suit ND thinking. It’ll have to be funded privately and so will testing for her having PCOS like me (causing the acne and other symptoms). GP has been no use unfortunately. Luckily we have some savings after inheriting a small amount of money from a relative, without that we wouldn’t be able to fund it privately.

Sorry forgot to add to op - I hear how desperate you are but just based on my own experiences and new research on ssri’s it’s worth investigating all other frontline options first x

Seroxat ( Paroxetine) is still very much available.

Why the hate for SSRi’s? They’ve saved my life twice. And they’ve turned my 19 year old dd from someone who was scared of everything to be able to go to uni and make e friends.

Counselling doesn’t always work.