AIBU to cancel my daughter’s CAHMS assessment??

[CandyMandyy]

My DD has been having medical issues that have caused her to experience severe nausea after eating. This has been going on years and does seem to come in phases. She is taking medication for acid reflux which has helped but hasn’t completely cured her nausea.

She was referred to CAMHS as the doctors believed that she may have become hyper aware of sensations coming from the stomach, as a result of all the discomfort she has had in the past. Apparently this is a real issue that can happen in people who have experiences persistant discomfort from an organ.

The CAMHS team (eating disorder clinic) want to see her as her weight for height is far too low. However, we have started her on a medication for delayed gastric emptying and seem to be seeing her eating increased portion sizes, which is just such a relief.

CAMHS have just sent through some questionnaires that she has to complete before the appointment. There are questions on these forms that I think seem very unsuitable for my DD’s situation and I’m concerned that they could even plant seeds. Things like “have your eating habits made you feel ashamed of yourself?” and “how unhappy have you felt about your weight?”, “have you felt fat?”.

I understand the reason for these questions being on the forms, but she is 11 and is definitely not suffering from an eating disorder. CAHMS were confident of that when we had our telephone consultation.

DD appears to be having some success with this medication. I’m wondering if the right thing would be to postpone the CAMHS meeting, and potentially cancel depending on how things progress (if she gains weight and her symptoms subside). I obviously want what’s best for my daughter, and that is at the forefront of my mind, but I’m wondering if seeing someone private would prevent her from needing to answer all these questions that just aren’t relevant to her and could be possibly triggering.

I’d be so grateful for opinions and advice. I also hope I don’t sound ungrateful for the work the team at CAMHS do. I just want what’s best for her and want to do the right thing.

I agree with your reasoning on this actually, I'd postpone for now (or fill out the questions yourself!).

If you cancel the meeting and then the medication stops working then you would almost certainly find it very difficult to get another referral.

I'd be inclined to move ahead with both.

I understand that you are worried that asking your daughter these questions could give her another problem with eating (I did write the term eating disorder but it sounds like she already has physical problems around eating that may have triggered anxiety).

It's very unlikely she will develop anorexia or bulimia from being asked questions.

I think I would cancel, yes.

I say that as a parent of a 13 yo Autistic girl who also has numerous physical medical issues. CAMHS seemed unable to be able to differentiate between the two and really didn't get it. They ended up causing more stress than good. It frustrates me no end, although I accept they are not experts in all areas, I still think they pigeon hole kids.

You could always ring to explain the situation and ask if they would keep something open to re referral for the next 12 months. (It has a name but I can't recall what, where you don't go back to the back of the queue)

Best of luck with the new treatment.

Fill the questions in yourself and send it off. It could still be mo ths before you're offering a face to face appointment and her medication might carry on working in the meantime, in which case you could cancel the appointment when it rolls around, but just in case it doesn't you should stay in the system so that you remain in the "queue".

I think I would cancel, yes.

I say that as a parent of a 13 yo Autistic girl who also has numerous physical medical issues. CAMHS seemed unable to be able to differentiate between the two and really didn't get it. They ended up causing more stress than good. It frustrates me no end, although I accept they are not experts in all areas, I still think they pigeon hole kids.

You could always ring to explain the situation and ask if they would keep something open to re referral for the next 12 months. (It has a name but I can't recall what, where you don't go back to the back of the queue)

Best of luck with the new treatment.

Don’t cancel the appointment, but also don’t fill in the questionnaire. Go to the appointment, and talk with the staff, you never know how the next few months / years will pan out .. and you don’t want to have to go to the bottom of the list.

Yes possibly delay..

Interested in your post though as rings a bell with my daughter.s constant tummy symptoms. She use also hyper aware of breathing.

Maybe I need CAMHS referral!
My dd is autistic and had poor interoception.

…I found CAMHS to be fabulous with DD.. just to add !

I would fill it in myself.It is early days with the meds and things might change .

i would complete the questionnaire with your daughter but leave out the qs that you are worried about, or explain why they are being asked in an age appropriate way.

Definitely attend the appointment because the waiting lists are loooong. If it’s not helpful for your DD then so be it, but don’t miss the opportunity because of strangers’ experience on the internet which may be totally irrelevant to your situation.

My dd has had to wait so long for CAMHS that I would take any appointment going rather than risk waiting another few years for a re-referral or just getting lost in the system.

But I would fill the questionnaire in yourself and just talk her through any questions you think wouldn't upset her and to which you don't know the answers without her.

Are you sure there's an option to postpone?

Camhs services (they're all different) rarely want a long list of people who might demand to be seen at short notice. It's more likely that if you decline this assessment they will discharge your dd back to care of her GP, and if you want to go back to CAMHS later you'll be starting from scratch.

It's normal to get a lot of questionnaires during the assessment process. Simply being asked a question does not engender mental health problems in people who did not have them. That said, if you're really unhappy with the questionnaires just don't fill them out. That won't stop you being seen. Don't fill them out on behalf of your dd - children's views as reported on questionnaires often come as a surprise to their parents.

I'd fill it in yourself instead. I definitely wouldn't postpone or risk being taken off the list. By the time you're top again she'll be 13 and potentially with an eating disorder!

CAMHS have an absolutely massively long waiting list here. I'd fill it out myself and go so I didn't get taken off the list.

I would keep the appointment. Quite honestly, if you feel that questions about her eating habits would be enough to trigger a bigger problem, it sounds like she may need some support. Just answer to the best of her/your ability and see how things go.

I would keep the appointment on the basis that if the medication stops working and you need the appointment the referral process is so long you may not get another.

i agree that parents don’t always answers these questions the same way children would. I’m not sure it’s a good idea to gatekeep here

Can you contact them to explain how and why their questionnaire misses the mark, prepare a briefing note for them on what the issues actually are and keep the appointment?

I agree that I wouldn't want those questions anywhere near an impressionable young person with a history of eating difficulties but it sounds like the right kind of assistance would be helpful.

The eating disorder specialists don't go round causing eating disorders. They're usually quite knowledgeable.

It doesn’t sound like your child’s issues with eating are to do with anorexia etc however I have seen children as young as 8.5 years old with anorexia nervosa unfortunately. It’s their job to keep an open mind about any referral they receive.

it’s much easier to navigate any medical system once you’re in it. I would keep the appointment absolutely.

My DD is autistic and as part of initial referrals for anxiety, we had to fill in a 'gatekeeping' questionnaire. It was very much not designed for neurodiverse teenagers and fortunately I attended the initial appointment with her. The support worker who was at the appointment seemed very confused by her answers. Examples included 'do you have issues with food?' to which she replied yes. This led to questions about restricting food intake or excessive food intake and I had to step in to point out that what she meant was that she doesn't like certain textures.... Being autistic..

We know of several girls who were led down the eating disorder route when they were actually autistic, or had long COVID... I am not sure that CAMHS has caught up with this and they still seem to push particular pathways without fully exploring the issues. It could just be our CAMHS is spectacularly rubbish!

I would ask the questions and note the answers but add your own notes as well. Then ask for a follow up discussion. As many have said, the problem with the system is that if you do not engage at any level, they kick you out.....

Appointments are like gold dust - if you end up needing one because the medication stops working, you don’t now that you’ll get one quickly. I’d keep the appointment and either not fill in the form as it’s not applicable, or fill it in yourself and explain at the appointment itself. They have offered an appointment based off symptoms, and this is a really good example of a standardised process not being applicable to all, but that doesn’t mean she still won’t benefit from an appointment where you can discuss the details.

Yes you should go the medication may stop working, she may revert and she's underweight. Do you want her to be on meds for life?

It is a mental health service so they will want to explore everything but surely you could fill the questionnaire in with her at her age?

My younger daughter has a lot of issues around food and illness and some of it is medical but tbh most of it is mental health but she believes it all to be true. It is all incredibly complicated and inter connected and imo mental health support is crucial.

I'd fill it in with your daughter but explain that it's a generic form about eating related behaviors and thoughts so some questions won't relate to her.

If she doesn't have an eating disorder than 'do you ever feel fat' will have no meaning for her. It won't 'give' her an eating disorder.

However, what if she answers 'sometimes' to that question, you would discover valuable information.

The increased sensitivity in an organ as you describe is not part of CAMHs remit. That is a physical medical thing. CAMHs is for mental and emotional medical things. I think postponing sounds sensible.

But I'm biased. Based on my traumatic experiences with CAMHs 25 years ago. And based on having an autistic child and friends with autistic children who have all been made worse or just failed by CAMHs. My personal experiences with CAMHs in addition to being many years ago was nothing to do with eating disorders. However once I was labelled as having mental health problems my autism was missed. Suffering abuse was missed because my records say I'm not mentally well when I was just autistic. And long term diarrhoea was fobbed off as stress induced IBS when actually it was just a fucking food allergy (I worked out for myself as an adult) that no one considered because once labeled mental that's all doctors consider as a cause for physical medical stuff. I'd like to say I'm sure it's better these days as I'm going back years with my experience but stories I hear from other parents hasn't given me hope.

I'm sure the questionaire you got is given to all parents and doesn't mean they have already formed their opinion. And I'm sure they will ask your dd the questions you worry about and potentially plant a seed because they are standard questions they ask everyone. On the phone you felt they understood so that can't be forgotten. But I'm absolutely sure they won have the physical medical training or experience to understand and support with an overly sensitive stomach that is medically caused because that's not their remit