Journeys in the Mental Health System in 2022

NB: For any parents- or patients- out there who are navigating the mental health system in the UK and struggling, please please feel free to reach out to me. I have 7 years experience with my daughter varying from childhood anxiety and CBT, childhood depression and DBT, autism diagnosis, bipolar diagnosis, BPD/personality disorder suggestions, police involvement, hospital stays, voluntary sectioning, more team interventions than I can count, and my own ADHD diagnosis. I also hold a diploma in trauma-informed care, and am in my final year of combined BSc/MSc Forensic Psychology with external work experience in patient and victim support

Following on from my last post, my husband came home at 8am as he’d been awake for a full 27 hours. The nurses assured him my daughter was being looked after and there was nothing more he could do.

At 11am, I phoned the hospital for an update.

They ward psychiatrist had released my daughter at 10am without informing us. She was a missing person again for 10 hours.

She finally appeared at her student flat, and was both hysterical and aggressive. Her flatmate phoned me with no idea how to cope. Apparently my daughter was ranting that her family had been replaced by ‘skinwalkers’, the police and hospital were ‘in on it’, and she needed help finding her ‘real’ mum.

I phoned an ambulance. It took 16 hours to arrive.

The ambulance crew reported back to me that she was hysterically crying for her mum, but when they offered to phone me, she got agitated saying they weren’t listening, I’m not her mum, I’m a skinwalker and her mum is either dead or in serious danger. They referred her to the Home Team and advised me they had recommended sectioning.

The Home Team arrived 2 days later. They decided against sectioning as, and I quote, “she didn’t want to go.”

Thus began a week of the Home Team visiting twice a day to give her new medications whilst she refused to eat. She went 10 full days without food claiming it had been poisoned, and only then ate because the Home Team threatened her with sectioning.

When I asked the Home Team why they thought this had happened, they said they believe she had been misdiagnosed as bipolar and actually has borderline-personality disorder. I asked why she hasn’t been prescribed sodium-valproate (a mood stabiliser) and they said it’s because she’s ‘child bearing age’. They also refused to prescribe her Diazepam (Valium), despite it being proven in a multitude of studies to stabilise both bipolar and BPD patients (as well as those with psychosis). They instead prescribed aripiprazole and upped her Sertraline.

The Home Team’s diagnosis suggestion didn’t sit right with me. She simply doesn’t fit the criteria for BPD. Afterwards, my daughter admitted that every time she tries to talk to her GP about her symptoms, he tells her to wait on the Personality Disorder team, which has an 18 month waiting list. Each time she speaks out, its written down on her notes as ‘attention seeking behaviour’ so she just stopped bothering.

Side Note: I’m not going to delve into BPD because it’s such a misunderstood and stigmatised diagnoses, but I think it’s important to note that as a person who has extensive training and a diploma in trauma-informed care, I reject the notion of diagnosing and medicalising personality. Instead of classifying a person’s personality as ‘wrong’ or ‘bad’, categorising their behaviour as ‘symptoms’, diagnosing them with stigmatising labels, we should be recognising people’s actions and inactions as trauma-related coping-mechanisms and protection strategies, and supporting them meaningfully towards healing and peace. If this resonates with you, please know that the way you manage your trauma and protect yourself is not inappropriate, it’s not ‘wrong’ or ‘bad’, and you are not a problematic person. You are coping the best way you can, even if at times it seems counter-intuitive, and there are trauma-informed therapists out there who can offer the support, validation, and guidance to help you manage your coping-mechanisms and protection strategies. Private message me if you would like signposting, or just someone to listen. You are believed, you are loved, you are worthy and worthwhile, and you are valid.

I attended a psych meeting with my daughter last week with a new team to find out what on earth is going on, and so much came out that I had no idea about. She related how she has auditory and visual hallucinations, horrendous hallucinations, voices which talk in a cacophony all the time telling her people hate her, that they want to hurt her. Visual hallucinations of a little boy with his throat slit. An ‘entity’ she calls The Dark Matter who is always there, always watching her.

The psych team asked my thoughts, and I said she sounded exactly like my schizophrenic grandmother who co-raised me.

Silence

Nowhere on her notes had they mentioned schizophrenia in the family, despite the fact I have tried to explain on multiple occasions to multiple teams that there’s a significant history of hereditary mental illness. Whenever I discussed it in the past, voiced my concerns that it could be onset psychosis, the various teams have always handwaved me, cut me off, condescended me, patronised me. It’s her autism, it’s depression, it’s a manifestation of anxiety. Not once have they ever actually let me finish my sentence.

For the first time in this 7 year journey they listened. They listened as I told them my grandmother’s behaviour and my experiences, they listened when I said I have a gut feeling, that this feels the same. They listened, they asked extensive questions, and they believed. They acknowledged the frustration of this journey, they apologised and recognised how traumatic being ignored has been, they validated that I am in a position to both intimately understand schizophrenia and recognise the symptoms, and they trusted my mothers instinct. To have people place value on my instinct as a mother, trust my intuition, was enormous for me as I have always been made to feel like I was ‘hysterical’ or ‘dramatic’ or ‘smothering’. I am a calm, articulate, educated woman with strong boundaries; I cannot imagine how mother’s without my privilege are made to feel.

My daughter has since been withdrawn from the Personality Disorder team waiting list, and has been transferred to the Psychosis Management team as an immediate patient with suspected schizophrenia or schizoaffective disorder. They have removed her from her GP surgery and found a GP who has extensive experience with mental health support and psychosis.

My daughter has also signed Power of Attorney to me through a solicitor, so in future I have a say in her medical interventions and can act on her behalf when she is unable to do so. I hate having this level of control in my adult daughters life, but she requested it after seeing the progress made in her psych meeting. She said she just can’t advocate for herself. I asked why she had rejected my offers to attend in the past, why she didn’t explain her symptoms to me in full, and she said she felt like a burden, that she had put me through enough, that she was scared I would walk away.

I’m heartbroken she suffered in silence, but now she’s reached out and we’ve built that bridge, she knows we are in this together. I will always have her back. I’m so incredibly proud of her for being that vulnerable both in front of me, and with me, and for trusting me with her deepest fears and to advocate for her in the future.

I can’t say this has been an easy journey. At points I completely lost hope. It felt like we were going in circles, that my daughter’s life would never be restored, then suddenly in the space of a week everything just…happened. 7 years of battle, 7 years of being passed from one team to another, sometimes several at once with no communication between them, and it just clicked.

I know the path ahead of us is going to have its bumps, I’m under no illusion that she will magically have lifelong stability and lucidity, but I’m confident in our ability to navigate this together as a team.