Referral to CAMHS - what to expect?

[TheHorrorOfIt]

My 14yo is being referred by the GP to CAMHS, for an anxiety-related potential eating disorder; she is very underweight so the GP says she is considering it an urgent referral and will speak to them today.

I keep hearing how CAMHS and related services are very over-stretched and under-resourced; can anyone in this situation advise on what to expect, in reality? How long does it take to get any input; is there a sort of gate-keeping service that you have to go through before any specific help is available; that sort of thing. The GP didn’t actually know, and couldn’t advise on how they actually communicate, so we are a bit in the dark.

Obviously I’m doing my best to reassure but any advice or experience would be helpful! Thanks

Dd was seen very quickly but they were really unhelpful. Basically said it didn't matter that she wasn't eating and just to nibble a few bits each day. It was pretty disappointing. Dd was lucky to have some friends who suddenly went on a health kick last year and she started eating a bit better because her friends were.

It can vary.
Our experience wasn't with an ED. DD was referred by GP. After about a fortnight I got a call from CAHMS to book a slot to assess DD (done over the phone) this was another couple of weeks later.
We've been through the process more than once now.
The first time they wanted DD to have a course of 1:1 with a counsellor. We waited maybe a couple of months and then had 6 sessions.
Most recently she was below the threshold for that and was referred to an online resource with weekly check in via email with a specialist. This was sufficient for her.
A friend of mine has needed support for a child's ED and found it a little wanting. They could only offer one session a week and child was in crisis. They were able to pay privately for extra. Child is now much better - 2 years or so down the line.

Our local CAMHS are looking at at least 1 year waits currently. Over run with referrals , young people presenting to a&e. Can’t recruit staff. Not enough staff for the sheer volume. Mental health services aren’t great and even when you get support honestly it’s often not enough.

It is very variable - our experience with CAMHS was more positive than many - but DD was nearing 18 with an ED and I think they threw everything at her as they were worried about her falling off the cliff edge of transition to adults..

However, I should be honest and say you'll have to be ready to do a lot of work yourself. Basically with an ED the intervention is "family based therapy' which means you as parent/carer take the lead in providing food 3 x meals and 3 x snack per day - CAMHS will provide a meal plan. You also then have to figure out a way to get child to eat with no real guidance on how to do that (we had meal support which entailed someone coming out to our house to support DD eating) - unsurprisingly DD ate when they were there but not when it was just us. You also have to deal with associated mental health challenges and then feedback once a week to the CAMHS team.

I have likened it to a surgeon saying "Now Ms Wilson, your daughter needs her appendix removed. I'm a surgeon so know what to do, but I'm going to ask you to do the operation. There are some surgical tools on that table over there - why don't you have a go at removing the appendix and then we'll catch up with you next week to see how you're getting on"

There is a support thread here - it has been invaluable for me - please do join us if you need space to rant and rave and know that others understand and offer support as well as practical experience and tips www.mumsnet.com/talk/eating_disorders/4471980-Teen-Eating-Disorders-Thread-6?reply=117079578

A long wait

I referred DD 6 weeks ago, chased yesterday and was told at least a further 3 month wait

Thank you all. I had a feeling this would be the case - ie not quickly enough, and not enough generally.

I actually think there are other things that could help support her - and that she would hate the whole experience of being forced to talk and have a counsellor etc But the GP has talked about it as the best route and so obviously I can’t (and won’t) talk it down.

I do have to manage her expectations though. She’s done well in looking for help but I fear now nothing will happen - other than an immediate flurry of “here is some calorific food that we want you to eat” (which tbf she does respond to) and so on

I wonder what private options there might be (if any?) I will find the money if needed but have no idea where to start.

I'm afraid I'm another one with a very bad experience of CAHMS. I can honesty say that the whole experience made my DS worse, mainly by teaching him that it's no use asking authority for help as you won't get it.

My advice is to quietly manage your DDs expectations, while also bracing yourself to have to push and push CAHMS to get your DD help.

Be especially suspicious of CAHMS trying to fob your DD off with online "peer support" groups. My DS tried them, and had the gumption to realise how dangerous they were; he said to me that they were full of teenagers vying with each other to "prove" that they were more depressed than anyone else. You can imagine that this would also be absolutely disastrous in a peer support group for kids with ED.

Thank you @myrtleWilson I’ll scoot onto that thread.

Ironically she eats perfectly well when she’s with the family, and extended family, but won’t/can’t eat at school (and I think in other situations where she feels awkward or sensitive) My sense is that we can get over the immediate physical issues and help her gain some weight but obviously the root cause anxiety will still be at play. There’s a lot to unpick, so it’s helpful to know that it mostly needs to come from us not any HCPs

Your idea of urgent isn't the same as CAMHS. not because they don't care or are ignorant but due to volumes.

I was in similar position. Post urgent assessment, Was told child wouldn't be seen until they were eating more as it impacts cognitive abilities to do therapy. Then it was won't be seen until managing behaviours as they won't be calm enough to heal.

Basically would see them until they didn't need to be seen.

They did in the end see child but we are miles off any proper work due to wait lists.

The above makes a total mockery of MH treatment.

Of course your local services will be different so generalising won't help.

@ArcheryAnnie that is the exact thing my husband just said; it would be a disaster waiting to happen to put her into a circle of teenagers with similar issues. Well done your DS to see that it wasn’t helpful for him!

We are trying hard not to be all old-school/stiff upper lip/reactionary about it but equally we do know our DD would probably not benefit from that sort of thing in the wider sense

It depends on where you live partly. They are stretched to the limits and the threshold for urgent is very much above where it should be- unfortunately this won't change until people want to train as HCPs in this area.

To add- the most effective thing would be to limit use of the Internet- apps like tik tok particularly; but appreciate this isn't easy.

Nothing. Expect nothing

Imo you can't expect much this side of Christmas...

My ds was referred due to anxiety related issues, school refusal, meltdowns and he would regularly say he wanted to end it all. We were lucky in the fact the wait for CAHMS wasn’t too long (about 8 weeks but this was pre-Covid), but during our interview with them we were told their service was very stretched and unless ds was actively showing signs of wanting to commit suicide they could not offer us anything and they basically left us to our own devices! I had to find him counselling elsewhere, luckily a local charity helped us. So in our experience CAHMS were next to useless. I do hope you have better luck OP, hope it goes well for your dd.

CAMHS varies across regions and if your local service is adequate then you are lucky.
You need to take control. Start with the First 30 Days on FEAST.

Read about the Maudsley Method online - check out the Around the Dinner Table forum as well as using the MN thread for support (I'm not affiliated with them, just a resource).

My Ds has an eating disorder called ARFID. It has made him very physically unwell. We were unable to get any help for this with CAMHS ( he was already on their caseload for other MH difficulties). Or our local eating disorders team. We had to push for a specialist referral out of area. I'm not sure what would have happened if we hadn't.

In just over 18 months Ds has received the sum total of 4 therapy sessions with an assistant psychologist at our local CAMHS. He's 18 soon, so will be too old for the service.

Hi OP. I just wanted to give you a handhold. We are in the same boat except haven’t got the CAHMS referral. I’m expecting very little. I think my child is on the verge of anorexia. It’s a scary time

i have just found a private counsellor. I have said she has to eat three meals a day or can’t go to school (she likes school) and I think it’s early stages for us.

you aren’t alone in all this. Very best wishes

Honestly? Not a lot. They were pretty useless, I hope you have a better experience. I'm sorry so sound so negative.

Lot of information; and advice here - thank you all so much! I’m very sorry to hear so many are in a similar situation; perhaps it has always been this way and I’ve only just noticed, but I do think the impact pandemic on teenagers has been awful as well

Really hope things start to get better for everyone suffering

I am in a similar situation in that my DS has been self harming and not eating at school. Very much anxiety driven. It was school that alerted us to the issues. They have now given him a lunch pass and he basically now goes and eats his lunch early rather than with everyone else. It’s working really well - would your child’s school be able to do something like this?

Expect nothing. It's so underfunded and so few staff for the huge wave of poor mental health in children since covid. It was on its knees before this.

Other things that may help you more are parent support groups specific to your child's situation. Look on Facebook. Change your user name. Other parents with knowledge are truly a powerful support.

The GP might have access to other child counselling avenues. Ours did and we had 8 weeks funded counselling straight away.

Also looking online about support via your LA. We have a funded children's centre that's not NHS. It's more to support parents to support the child. This offered good support.

I found CAMHs supported only when medication was required. Otherwise nothing practical to help. I'd say it was far worse than no help as the false expectations of help and being repeatedly let down were damaging to the child.

I've forged a path myself, Camhs will review meds and will write support letters for DLA. That's about it.

Even when my child was admitted for significant self harm and the discharging psychiatrist stated CAMHS would visit each day to support the first three days of 24 hour watching. I got a single two minute phone call on day three. That was it. I fought against a section as the only bed was 5 hours away!

Sadly there is no help for children. Not through the NHS. I will say though, Camhs are lovely, just unfit for purpose. The funding isn't enough the people who work there are doing their best with nothing.