DD not accepting diagnosis

[Aquamarine25]

I really would appreciate some help & advice.
Adult DD became ill with psychosis 3 years ago with persecution delusions & diagnosis of schizophrenia. She does not accept that she is ill.
EIP ended last summer & since then I am sure that she has not taken her antipsychotics. I have just found 12 months of unopened meds.She is under CMHT and her treatment order has been extended for another year.
Should I inform CMHT that she hasn't been taking meds for a year? I feel sick that this would betray her but don't want her to fall ill again. Will they put her back in hospital? Being hospitalised 3 years ago caused her a great amount of stress.
She functions fairly well except hasn't managed to get back into employment.
Please can someone help. I am at a loss & so sad for her.

Yes you must tell them.lack of insight is common and risks a bad outcome.

Thank you ForDreamy. Please can I ask if you work in this area?

If she is on a CTO then not taking the meds is probably a breach that could lead to recall to hospital (depending on the conditions)
but if she is functioning and not currently unwell they won’t do that as a first option. I would tell her Care co but ask that they don’t say the info came from you and mark any entry on her notes 3rd party info not to be disclosed. They can then do a home visit and ask to check her medication or at least ask her directly about it. Lack of insight is very common and wanting to come off meds is understandable as they have nasty side effects. It’s better for her to talk to the team about a dose reduction or a switch than to just come off without saying. It’s a shame she didn’t feel she has trust with her team to do that.

Thank you Shrinkhole. That is my worry that she will be recalled to hospital. Last time, the stress almost caused a family breakdown. She left hospital & was taken back by police and another time scaled the garden wall & was missing overnight. She was clearly very distressed by being there & I also ended up on meds due to anxiety.
What makes it so difficult is that she is such a lovely, gentle person. I feel so sad for her.
Thank you for your advice about ensuring my name not mentioned.

The thing is, if she is functioning quite well and is not experiencing symptoms of psychosis, it is understandable she won't want to take her meds. Antipsychotics can have some really horrible side effects. Does she have an understanding care coordinator? Could you let her know you know and support her to speak to them and work out a new treatment plan eg a reduction in the dosage of the meds? If she has been generally stable for a year without them, there is good evidence that a change in her care plan should be considered.

Thank you for your reply Mattressahoy.
If I try to talk to her, she just shuts me down completely & refuses to engage. She is 28 but lives with me.
I don't think she is still experiencing psychosis but I cant be sure. Shes adamant that being spiked/followed did happen, although I'm not sure if she believes still happening now.

I'm a GP.

OP, My daughter (16) has had declining mental health this year and is now at crisis point. Camhs have taken months to get us an assessment and my daughter had an episode this weekend (obs still diagnosed).
During this (and previous ones) she experiences hallucinations, gets very scared, hears things and says she can't sleep as there are too many thoughts in her head. She cries and shouts 'make it go away' and other things. She says the thoughts won't leave her alone. She feels numb and lacked any emotion today speaking to the MH team. She thought there was someone outside and got really scared telling me to shut my blinds etc.
We have seen MH at the hospital today and they are going to expedite to CAmHS as she's also self harming.
I don't know much about the condition at all but wondered if this sounds like it or a bad episode of depression (I've had depression and anxiety).
I also have nobody i can really confide in about this.

I am so sorry to hear this old rivet. My DD was a good bit older (25) when she had a long psychotic break. She had lost her job during covid lockdown and was suffering bad depression and anxiety. Psychotic symptoms (being followed, spiked) started after a period of very heavy drinking.
I really hope that your daughter gets to see calms quickly.
I really feel for you both, having a child with MH issues nearly caused our marriage to split, the worry and stress really took its toll.
I hope you have some family support and your daughter gets the help that she needs.

Thank you Aquamarine. I hope so. It is exhausting.
Did you find medication helped her?
She is about to start college in September and just did her GCSEs.
She has support this weekend from Safe haven until she gets an assessment.

I hope you are ok and keeping well yourself.

How many episodes did she have?

I ask because there was a lady on here a few weeks back who had been given a schizophrenia diagnosis who really shouldn’t have had one.

I have been on antipsychotics. They are horrendous. They trash your body and your mind.

I would leave it for now and keep an eye on them. If they haven’t taken medication for a year and aren’t psychotic then it’s good. Read up on trials of antipsychotics. The Nordic countries are doing a lot of work on this and having good outcomes for stopping medication after FEP/ EIP.

The great thing is she lives with you so you can keep an eye on her.

Hi Old rivet,
The first antipsychotic didn't help and had horrible side effects. Olanzapine worked & she stopped being paranoid but absolutely believes that being followed/spiked did happen. She refused to discuss it with me and is very guarded with MH Team.
We were supported by an early intervention team but only lasts 2 years here in Scotland.
Thank you, I am still very stressed & worried for her future.
Hopefully your daughter receiving help promptly will minimise any disruption to her studies. Look after yourself too.

Hi Teeny,
Thank you, I must have missed that thread.
We didn't even know that she was psychotic, thought that she was depressed/ anxious. She kept her thoughts very much to herself & it was a shock when it all came tumbling out.
I'm sorry you have also been on antipsychotics, they really seem to mess with your body one way or another. She was on them for 2 years.
I think still living at home is the best place for her just now, she is very quiet & her friends have all moved away for their careers or getting married. At least at home, she has us to chat to.
I will look up the Nordic trials, thank you.

Good luck. I hope she doesn’t have it. It’s very over diagnosed imo and to have a first episode at 25 is prime time for females so they pretty much always tick the schizophrenia box.

I was lucky. I had my FEP at 27. But I had a great doctor. She said she should tick that box but she’s not going to because it is a limiting diagnosis (makes you ineligible for life insurance, some travel visas and even sometimes organ transplants). She said if I came back then I won’t be so lucky with the next doctor.

My best friend also was studying psychiatry with some of the best minds in Switzerland. He told me the new studies showed I needed to get off the antipsychotics quickly to give me a chance at full remission. Sometimes it works, sometimes not. But it did work. I went into remission. Nearly a decade on now and no further episodes. I am out of the woods finally and feel confident I don’t have it. But I was lucky. Pretty much most other doctors would have ticked the schizophrenia box and I don’t know what that would have meant for my life.

Thinking of your DD 🌷

I'd be tempted to tell her care team, and ask them not to let your DD know that you had spoken to them.

If your daughter has been off the meds all this while without a relapse then her team needs to know, as this will be part of the information they need to assess whether she continues to need a prescription at all.

Although they could technically recall her to hospital that is highly unlikely if she is currently well-functioning. I'd be more worried that they might try to get her to agree to a depot injection, which would be stressful for her. (It may also be a very helpful thing, but if it is not wholly consensual it is a big imposition.)

But basically my main concern would be that if she isn't taking the meds and isn't being honest about this with her care team, then she is vulnerable.

I do absolutely accept that anti-psychotics are nasty drugs to be on, but as her mother you perceive her to lack insight about her condition. so on balance I tbhink she shouldn't be handling decisions about meds alone.

(I'm not a healthcare professional, just someone who had a son with recurrent psychosis.)

Just to add, I feel very wary of the idea that schizophrenia is over-diagnosed. Diagnosis requires a minimum duration of at least six months, and no-one wants to saddle a person with that label without good grounds.

Sorry to jump on. Does that mean being in a state of psychosis constantly rather than every now and again.
I am trying to distinguish between this condition and Psychotic depression.

My understanding is they have to identify when the psychosis manifests itself.

I have bipolar and can experience psychosis. I only experience psychosis when I am in a severe manic, depressive or mixed episode so even though it can go on for longer than 6 months schizophrenia has never been mentioned as a possibility. The mood issue comes first and then as it gets worse the psychosis comes in

If the psychosis is experienced outside of a mood episode or the episode starts with psychosis and you then develop mood symptoms - schizophrenia or schizo-effective disorder are possible diagnosis. The former if the psychosis symptoms are the prominent features of the episode and the latter if it's associated with mood episode and most mood episode feature psychosis. To the best of my knowledge anyway

Thank you very much for explaining. My daughter is usually in a very depressed state (sadness, self harm, numb, withdrawn) which has led to the episode but seems to improve after it for a while then she'll get all depressed again.
Today she has been to work and seems fairly happy though I don't see the manic stuff really.

Op I would tell her care team but ask them to keep it anonymous if possible. My ex (sons dad)'had severe mental health problems a few years ago. He's now a lot better but will be on medication for life. He has a monthly injection and sees the psychiatrist twice a year. Myself and our sons know the warning signs now but no more episodes. He sees his sons regularly

No, I don't think you have to be actively psychotic for the whole six months. I don't want to try and get into too much detail, though, since I am not a medic. If you google the criteria some useful pages come up I think.

Do you have recovery college in Scotland? My DB has paranoid schizophrenia and made the most progress when he went to RC. He also went to a hearing voices support group. It took me a long time to understand but instead of talking him out of the voices etc I learned its better to say 'that must be very scary for you'.

I'm not the thought police after all, DBs free to think what he wants. He's able to recognise it now e.g. he can say I've been having some really loopy thoughts etc.

I think its a pretty unrealistic ask for someone to have full insight after a couple of years - it's like asking someone who had a cancer diagnosis to explain the entirety of what the experience has meant to them. It's not like that. It's an ongoing process of evolving and getting used to how the brain works. It took my DB a few years to settle. He also had a lot of housing changes around then and he was using recreational drugs so probably didn't help.

If you can encourage your DD to groups that might be good, she's quite young and her brain is still developing so anything that safely builds her independence will benefit her in the long run. If she's well enough eventually there's The Kings Trust which works with young people up to 30, they have short Getting Started courses.

Just to give you hope, my DB was dx at 26 and sectioned, he's never been sectioned since and is now 48. He went back once voluntarily for respite years ago. Important to mention that it is possible as the outcomes often seem so bad for schizophrenia. I have always worried about his safety though, only now that I'm trying to train myself out of worrying as much.

I wouldn't get too hung up on the label - I read somewhere they were talking of reclassifying schizophrenia as psychosis spectrum disorder. I don't know that antipsychotic medication has moved on for decades. I think they mostly work by blocking dopamine receptors as the theory is the psychosis is caused by too much dopamine, but they don't work for everyone. Most clinical trials have been done on men in medical research.

But you have to weigh up pros and cons. DB takes the olanzapine as it helps him sleep he says. He got on better with it when he started taking an antidepressant with it as well.

Best of luck.

Thank you very much to everyone who have taken the time to post.
There are recovery colleges here atleastitsnotsunstroke but since she does not believe she has had psychosis, she will not attend anything or accept any help.
Thank you for posting the really positive story of your DB, it really helps to know there can be a positive outcome.