Who can prescribe Setraline to a teenager?

[RobinGoch]

Hello all, I wonder if someone can advise.

My daughter is 14. She is on the pathway to an ASD and ADHD diagnosis. She has struggled dreadfully with severe anxiety and OCD type behaviours. She was in burnout this time last year, a really frightening time and I ended up deregistering her from school and she started having some counselling with an autism charity which continues to really help her. We were referred to and then withdrawn from ELCAS (the Lancashire version of CAMHS) as she was more willing to engage with and making some progress with the Autism Charity counselling.

A couple of months ago we hit a bump in the road and she was struggling so much with OCD that she was unable to leave the room alone, unable to complete simple tasks because of having to repeat things so many times and follow certain rituals etc. In desperation i went back to the GP who to my surprise agreed to prescribe 25mg of Setraline and referred us back to ELCAS. She continued attending counselling with the autism charity during this time. Six weeks on and things have improved a lot. The OCD behaviours are still there but she is able to function more, the quality of her life has definitely improved, she says she is much less anxious and this has opened up space for her to work on her thinking and manage her compulsions.

She has had two online assessments with ELCAS where they checked if she was suicidal or self harming and got basic info. She engaged in so far as she sat with me and nodded and shook her head in response to questions but didn't want to be on camera. We discussed how she engages better with her Autism Charity counsellor. ELCAS say she needs to be following a programme of CBT for her OCD and should not have been prescribed medication. ELCAS have had a meeting with the autism counsellor as I raised the issue that my daughter struggles to identify and understand her emotions and this needs to be taken into account in any CBT type programme. ELCAS agreed that she should continue working with the Autism Charity and that as there is a very long waiting list (months) we agreed to withdraw again from ELCAS.

ELCAS are continuing to say that the GP should not have prescribed medication and that if they had taken over her care they would have discontinued it. The GP are now saying that they've been told by ELCAS not to issue a repeat prescription. After a lot of phone calls I've managed to get an appointment with the prescribing GP on Monday. I am very concerned that if my daughter just comes off the medication suddenly it will have detrimental effects. I know it's not the only answer and believe me I have dedicated all my time and energy to supporting my daughter in every possible way since she began to struggle.

I know her and I know this medication has helped. I'm worried that both the GP and ELCAS will wash their hands of her. I feel as if we are about to fall through the gaps of a broken system. Can the GP just withdraw support like this? He may have made a mistake in prescribing in the first place but that's done now and actually it's a mistake that has helped us. I feel like I'm being judged, I know I'm being a nuisance but the whole system is just so broken and my child's wellbeing does not seem to be at the forefront.

Has anyone experienced anything like this? What would you do? What should I say on Monday?

Sorry you are having such a horrible time.

My DD was prescribed her medication by the psychiatrist at CAMHS - she’s not on Sertraline though. Our GP wouldn’t touch it because of her age (17).

We started on a super low dose (0.1ml - we had to start with liquid) and daily phone calls before we gradually 0.1ml at a time upped it. We’re still only on about 2mls now. She has noticed a big difference in mood though. They’ve been clear that we shouldn’t just stop it, she needs to withdraw as slowly as we’ve upped it.

I would push to keep her on it if it’s working. We have a very similar experience to you with OCD, and falling down the cracks, we also ended up with agoraphobia at one point and I never want to go back to those days. DD did several courses of CBT but never found it helpful.

I did feel a bit weird about DD being on medication to start with tbh, but the change in her is amazing and I wish I’d pushed for it a long time ago.

thanks for replying @alloalloallo . It's good to hear you and your daughter are in a better place now. OCD is an absolutely horrible condition isn't it. It's interesting to hear that your GP wouldn't touch Setraline because of age. I was under the impression that in the NICE guidelines it was the recommended SSRI from age 6 up. We've been struggling for years before getting to this point and I too do feel it's given her a real chance to come up for air. I just wish we had a well funded joined up system backing us up.....

We are in Lancashire and Ds (13) has been on setraline since he was 9 but even now we can only get it from CAMHs. They are currently asking the gp to take over prescribing but still with them in charge of it.

ELCAS are right. NICE guidelines state antidepressants should only be initiated following assessment by a child and adolescent psychiatrist, and therapy should be given alongside them.

I would complain to PALS about CAMHS and say that you will hold them accountable for any deterioration in her state of mind. It is true that the GP made a mistake but you are where you are and withdrawing medication could be construed as knowingly doing your DD harm (which they aren’t supposed to do, obviously as HCPs).

Is their a prescribing mental health nurse who could take over the prescribing? We had one in our local CAMHS team.

Last suggestion…Can you afford to see a private psychiatrist??

Sorry, I wasn’t very clear. Our GP wouldn’t prescribe her anything because of her age. It had to be the psychiatrist at CAMHS.

DD has some other disabilities and it was just felt Sertraline wasn’t the best mix.

I have to say, we’ve been very lucky with CAMHS here. They’re very on it.

@JustKeepBuilding yes I can see it looks as if the GP intially f*ed up in prescribing them. Our problem is she is accessing therapy, but not through ELCAS....... and waiting lists within ELCAS are looooooooooong. So now we'll need to come off the medication despite it having a positive impact......aaaaah

I was on sertraline as a child and it was prescribed by a psychiatrist - the GP wasn't able to prescribe due to my age.

Thanks @SixDinnerSally that's helpful.....that's what I'm worried about, that we're in a position now where we could actually be doing her harm.....I don't know if I could afford a private psychaotrist...it depends what it costs but it is something I'd consider...where do you even start with that? I will ask about a mental health nurse practitioner when i go on Monday....

that makes sense, I'm glad it's worked out for you....

Hi

My daughter 15 has severe OCD, in desperation I found Prof Veale who after one private Zoom consultation gave me a prescription for Setraline for her. Our Dr gives out the actual medicine. I was desperate, my daughter was suicidal so I managed to get on his cancellation list (his actual waiting list was 7/8mths). www.veale.co.uk/

It wasn’t cheap, but CAHMS weren’t helping. It felt like it would take me taking my daughters body to their door would have been the only way to get their attention.

It so horrifically stressful, sending you all my love x

I think it might be up to £500 for the initial appointment…Not sure about cost of medication or medication or subsequent review appointments. It’s really a question of googling to see what’s in your area and ringing them up. Good luck x

I would push ELCAS for a psychiatrist assessment rather than voluntarily withdrawing from their service. They may tell you this isn’t possible but if you push for it it is.

I think Prof Veale was about £380 (my ex paid ). He’s very experienced with OCD

Oh yes, online appointments are obviously easier. My experience was pre-pandemic so it wasn’t really a thing then.

@SparklyStone thanks for this. Yes it's a horrible horrible illness, unbearable to witness the struggle she's gone through, it's like she was taken over by viscious demons who would just not let her rest.....how is your daughter now? Thanks so much for the link, i will look at this closely......

Yes i feel like I've been kind of rushed and bullied into making decisions without really understanding what the hell is going on..... it was very much implied that it would take months and months to get to speak to anyone and that when I did they would not consider prescribing..... that my daughter needs to complete the CBT through ELCAS....and she needs to engage in the way they want her to, . but in my mind this is all complicated by the fact of her probable autism....she really does struggle with strangers...she really can't name and recognise how she feels..... and she has done really well despite it being really hard to come to trust a counsellor with the Autism Charity who is working on CBT and ERP strategies with her but in a way that makes sense to her given her neurodiversity...

Will they not let you stay on the waiting list while your DD continues with her therapy with the Autism charity?

We found a private therapist for CBT while DD was on the waiting list. CAMHS were happy to accept that she’d done it so could move on through the various hoops pretty quickly once she got to the top of the list.

I’d contact somewhere like PALS - I had to speak to them for something else and they were great.

DD struggled to get her head around CBT - she also has autism, and just couldn’t do it. She was also referred for habit reversal therapy - primarily for her Tourette’s, but she did find it useful with some of her OCD tendencies.

Are they planning on just stopping the meds? I don’t know much about Sertraline, but it was made very clear to us that DD shouldn’t just stop her meds and had to withdraw slowly.

I would push back on ELCAS. Sadly with services how they are DC are more likely to get support if their parents push. They need to adapt their services so DD can engage.

Has DD had OT and SALT assessments? They can help with emotional literacy and emotional regulation. Are the school providing any support?

You know the medication is working for your DD. CBT might actually be more beneficial if she keeps taking it. It takes the edge off severe OCD so that she can complete other things, such as a course of CBT. Then it could be gradually withdrawn, but only under close medical supervision and it may be decided she continues to need it. Antidepressants must be prescribed with caution in teenagers but a psychiatrist obviously weighs up the benefits with the risks. Your DD deserves to get her life back

@GlassDeli @JustKeepBuilding @alloalloallo thanks all...yes i'm beginning to regret agreeing to close ELCAS referral. The sense seemed to be that I had to choose between the therapy she was having and ELCAS, the two could not run concurrently....but you're right that's crazy - if she has something that she's comfortable with and engaging with and she can do whilst sitting on a waiting list then surely that's a good thing...I need to get my ideas in order and talk to ELCAS and PALS i think.....and see what the doctor says on Monday...I feel slightly less panicked as surely they won't just withdraw all medication straight away....

If they won’t let you stay on the list while she’s already having CBT, then it seems a bit like they’re being awkward. I’d definitely speak to PALS

CAMHS wanted DD to finish the course of CBT before she began anything else with them because they didn’t want her doing 2 things at once, but had no problem with her seeing a private therapist while she was on their waiting list given the length of it. It wasn’t useful to make her do it again when she reached the top of the list, so they moved on to the next thing.

It did take a good year before they’d prescribe her any meds though. DD has some other stuff going on as well so we had to rule out a whole load of other stuff first.

I would be very firm your daughter stays on the medication. That’s a low dose (adult lowest dose is 50mg) and it’s not unknown to be prescribed for teens.

If CAHMs want to reassess that needs to be done with the input of a psychiatrist, although if your daughter is no longer under their care I cannot see why they would try and overrule the GP.

Your daughter is also engaging with counselling which is best practice so point that out to the GP.

Hopefully the GP will be able to overrule. If not I would go to a private psychiatrist to get it reinstated, tell your GP you are doing that and you would then like the perspective on the NHS.

It’s really poor. Don’t feel you are being a nuisance, you have to advocate for yourself.

She is better from the suicidal point of view, the medication has helped calm her. The OCD is an ongoing battle. I unwittingly enabled much of her behaviour which we are trying to stop. It’s so hard! Good luck x