A lot has gone on recently in my mental health journey, and as I came to recognise that I hadn’t posted any new content in over one week and started trying to think of what to blog about, I realised that it’s been a long time since I’ve talked about recent goings on! Like, I feel as though a lot of my most recent posts have largely been collaborations and reflective, regarding advice I’d give or things I’ve learnt rather than what’s actually currently happening in my life. And now that a number of pretty big things have happened this past week, I felt inspired and – to be honest – compelled to blog about them. I really want for this post to take I’m NOT Disordered back to its very roots in the fact that it was created to blog about my mental health and what was happening for me in the psychiatric hospital I was an inpatient in at the time, and I don’t want the very valid fact that blogging is (still) therapeutic for me, to get lost among adverts, awareness dates, freebies, events, and complimentary experiences…

So, in the beginning of December, I had a bit of an incident with a Crisis Team call handler (I did actually blog more thoroughly about it here)… But for those who don’t want to go back and read that, the basics are… My GP had recommended I go to hospital to have an infection treated but due to a ton of strange thoughts and some suicidal feelings, I refused to go. Whilst all those things were in my head, the part of me that was 100% me and who recognised how physically poorly I felt, knew I should go to A&E, and so I called the Crisis Team in the hope that they could talk me through things and really encourage me to get medical attention. The call handler, however, didn’t ask why I was calling and told me someone would call back soon, but after three hours I called them again and it was the same call handler. When I told her that if she had asked me why I was calling perhaps someone might have called me sooner, she said that I never tell her why I’m ringing. As soon as she said it, I was thinking ‘I’m going to have to complain about that’ and so I turned my iPad on and pretended I hadn’t heard her, so that she repeated it. After the call handler hung up on me, I went to a nearby bridge which crossed a disused railway track and jumped from it – twisting my ankle, bruising my back, and breaking a few ribs.

So, the important bit that I didn’t write about in that post, is the outcome of my complaint; this was just because there was no outcome at that point because the member of staff responsible for investigating the complaint, had applied for an extension on his deadline to have the response completed. So, besides them accidentally sending me the unfinished report before approval!!!! – I actually didn’t even receive the report until the end of January, and to be honest, initially I was quite pleased with it because they had basically upheld everything I’d said – I mean, I knew they couldn’t exactly deny things because I’d recorded it; but they could have very easily just dismissed it (something they tend to be good at doing on a whole!)! But the investigator explained that he’d; ‘… spoken to the staff member in question and stated that the reason/s why someone contacts our service need to be asked without exception as per the call handler protocol.’ He also said ‘the call handler also did speak of perhaps an assumption and familiarity with regular callers that she is generally aware of the nature of their calls. I reinforced to the call handler that moving forwards all callers should be asked the nature of their call…’

I said that I was happy with this initially, but when I re-read it over the following 24 hours from receiving it, I realised that the only reference to some sort of apology was this one sentence that said ‘the call handler on reflection was apologetic for not having asked you the purpose of your call and accepted that by not doing so she had acted out of the agreed call handler process.’ But, other than that one sentence in the entire four-page document, there was no other mention of an apology. I also noticed this sentence: ‘as part of an agreed action plan this has also been discussed formally in her clinical supervision’ and I wondered what that actually meant or entailed, so I called the Complaints Department. They explained that it basically meant this would go against her at any appraisals etc. and then said they would ask the investigator to add an actual apology to the report.

The final bit which really stuck out to me in this report/response, was an acknowledgement of something I believe, but which it’s sad to think they recognise too… ‘It is also felt that our staff group would benefit from an education intervention in regard to attitudes and values, to hopefully prevent any perception that callers do not feel listened to, validated, or that staff lack compassion.’ Now, surely if there’s anyone who shouldn’t need training to provide compassion and validation it’s a member of a mental health Crisis Team! I mean, I seriously believe it should be a vital quality that the staff have, can evidence and illustrate, before even joining the team! In my eyes, it seriously brings into question whether someone is in the right job; if they don’t have a natural instinct, attitude, or behaviour that is essential in their role and have to be educated on how to do it, perhaps there’s another role they’d be more suitable for.

Whilst I would 100% agree that the Crisis Team need such training or ‘education intervention,’ it actually ended up angering me to see this investigator state his own recognition that this is the case. I think that’s because it is written so matter-of-factly! As though acknowledging this huge room for improvement – this massive factor that’s essential for service users in a mental health crisis – is a small, insignificant act and it angers me that they say it as though holding their hands up and saying it needs to be done is completely fine. As though that’s adequate and acceptable. Like, they shouldn’t need this! They shouldn’t need training to be a person! They shouldn’t need education to be told which qualities they should have that would be beneficial for those they’re supposed to be helping and supporting. Those who are really the bread and butter of their entire job in the first place! In my eyes, it would be like me saying that I was going to be a Plumber… When I have skills, education, and personal qualities and experiences which are pretty well-suited for the communications and marketing industry! And it’s like, why would you want to do something that you’re no good at?!

Then, the second incident with the Crisis Team (which I haven’t blogged about or even spoken about on social media) came up in the beginning of January when, yet another call handler, misspoke as well as also failing to ask me why I was calling! When it happened, I was actually still awaiting the report for the first incident, so I spoke with the investigator of that one and told him this second, similar incident had occurred and asked if he should look into both or if it needed to be a separate complaint. His words? “You’re joking?! Another call handler?!” In fairness, you could totally hear the genuine anger and frustration in his voice. He came to the conclusion that I needed to register it as a second complaint because putting them both together would confuse the deadline date for his report, and then he said he was going to send an email as we spoke to all of the call handlers telling them to always ask for the reason why someone is calling.

This time, similarly, to last, I was told that they weren’t very busy and a few hours later I called them back and said, “do you realise you didn’t even ask me why I was ringing?” and the call handler was like “alright…” And I kind of tutted and said “ok, so you’re not bothered about that?” And after a little pause she said “well, I mean… are you?!” Also once again, I recorded the entire conversation and so, when I put the complaint in, the investigator assigned to it called me and asked that I send a copy of the recording into the Complaints email inbox. Unlike the first complaint where the video was 25 seconds long, this was over 1 minute, and I had a number of technical problems trying to send it because of the sheer size of data that it was. At one point, the investigator called and said she’d been told I couldn’t send it in and I tried thinking up a ton of ways to get it to them before finally saying that she’d heard it over the phone so why did she need it. She told me that she might want to replay it and go back to bits of it. So, a bit frustrated and annoyed that I was having to keep trying to make this whole thing work, I said to her that it’s actually really sad that I have to send in this proof because really, the call handler should admit to what she has said and taken responsibility for it, the same way professionals have lectured me for years to take responsibility for my actions. The investigator told me she hadn’t even approached the call handler yet(!) so she hadn’t even had a chance to deny it or provide excuses.

I think that this – the question of responsibility and admitting to any poor actions or attitude that you’ve illustrated – is a huge motivator in these complaints because, as I said, these were qualities that psychiatric professionals have encouraged me to embody. But, not just that, they’re behaviours which those professionals used against me. Like, the fact I didn’t take responsibility and that I always blamed others for my decision to cope in a particular way; they turned that into a huge failing on my part and left me feeling like a pretty terrible person who actually wasn’t even worthy of their help or support. So, for these professionals to go ahead and exhibit those same flaws, very obviously and – hopefully – understandably struck me as massively hypocritical. It left me thinking ‘who gave them the right to call me out on something they do too?!’ It really reminded me of the old mindset around ‘Us Vs Them’…

From the minute I was first detained under section 2 of the 1983 Mental Health Act in 2009, I have been incredibly aware of this Us Vs Them mentality and mindset and yes – I have most definitely believed in it… Many times! And this initially was the case because it’s incredibly difficult not to think that way when you honestly believe that the best thing for you is to be dead and you have all these professionals stopping you from doing that. And they’re saying they have a ‘Duty of Care’ but for you, that you feel that this actually translates into ‘we’re just doing our job’ and that makes it hard to view them as actually caring about you and recognising what’s in your best interests.

It then becomes an ‘us’ when you recognise that you aren’t the only person being treated this way and when you meet another service user who voices having that same belief that they would rather be dead, how do you tell them that they’re wrong when you feel the exact same way about yourself? And so, you have this mutual, deep understanding that leads you to come to believe that no one – especially not staff from the Crisis Team or Police Officers – will ever develop or even appreciate. I mean, when I talked to another psychiatric hospital inpatient about the abuse I’d experienced for the first time, and she told me about her own trauma, I felt a sense of connection, comfort, and reassurance that I just knew no professional in the entire world could – or would – ever be able to provide or instil in me. She got it. She knew. And as upsetting and heartbreaking as it is to hear someone else has gone through anything even remotely resembling the worst experience in your life, it was almost a relief to know I wasn’t alone in it. That someone could actually comprehend the sheer turmoil and conflict inside of me – the thoughts and feelings that I felt professionals were ignoring, dismissing, and arguing with. It was like there was no one else in the world who would ever come close to understanding what I had gone through and why that led me to feel the way I felt.

The most difficult element to me finding people who understood, was that in doing so, it kind of exacerbated the distance I felt with professionals because it really magnified the gravity of it. It highlighted just how misunderstood I felt with them and how dismissive and downright ignorant they could be. There were two difficulties to this…

1.       It meant that I was more reluctant to call the Crisis Team or emergency services and hesitant to cooperate with any professional – even those who might have genuinely been trying to help me! I developed the belief that if I did confide in a professional, they would use it ‘against me.’ I started to think – and fear – that if I were to talk about an hallucination or dark thought/feeling to someone, they could then use that as reason to section me, use the Mental Capacity Act on me, restrain me, medicate me against my will.

2.       It meant that a lot of outsiders, saw my friendships with other service users as unhelpful and a bad influence on my thoughts and relationships with professionals. As though these friends were bad influences; when, actually, they were just unintentionally proving to be very real reminders that there were so many things wrong with professionals.

To claw my way out of this free-fall into old thoughts and feelings, I had to recognise that they were unhelpful and that the most powerful and productive response to the hypocritical staff wasn’t to avoid them or treat them poorly and with no respect; it was to put in the complaints and seriously hope that they will see the error of their ways. Plus, really, it’s all about preventing them from treating others the way I was treated – and, as wrong as this is, what’s the chance of them learning their lesson if no one highlights where they’ve gone wrong? I mean, it should be clear to them that they shouldn’t have said something or should have done something differently, but let’s be real – they either just don’t see it or they just don’t want to see it. Either way, my concern is that if I don’t speak up and they behave this way with someone else and that person does something very dangerous and it ‘works,’ I would actually – wrongly, but understandably – feel a level of fault, blame, and responsibility. And I refuse to feel like I have to take any responsibility for the professionals many methods of failing service users; so, I speak up and I feel at peace that at least I’ve done the best that I can to avoid these things happening to others.

I think that one of the most important components that I feel is really fundamental to this entire situation and complaint, is the fact that both incidents are with call handlers and that has meant that in those two situations, I’ve not gotten any further. I’ve not been able to speak to a Nurse who might have actually ended up being really helpful and supported me in keeping myself safe because it’s like I’ve been failed immediately and after being treat that way, why would I pursue things and still speak to someone in the Team? Rightly or wrongly, the reality is that one professional represents a lot more than just themselves; they also represent their team, their entire Trust, charity, or organisation, and even – to some extent – all those in the same profession! If one behaves terribly, it shines a light on so many others and leaves you almost naturally questioning whether they’re ‘all like that.’

With that in mind, I think it’s pretty obvious and understandable why I say that I’m now so incredibly reluctant and hesitant to call the Crisis Team after those two instances. And having a couple of bad appointments with my CPN and then a huge incident with my Care Manager, has meant I’ve started to feel pretty alone in terms of having the notion that I’m running out of professionals who care about me, who I trust, or who are helpful for me. I mean, fortunately I have my two Recovery Workers from Richmond Fellowship. They’re more informal help though, in terms of them not being about therapy, creating formulations, getting medication prescribed, and making huge decisions about my care etc. But I actually think that’s something that adds beneficial quality to them because I’m at a point in my mental health and psychosis journey where I’m honestly so terrified of being 100% open about my thoughts, feelings, and experiences, because I feel I have every reason to believe something will come from doing so. Something which might be against my will or just completely even without any input from me. I had someone actually say the other day “they’re not going to section you!” and a couple of thoughts went through my head…

1.       You have no right or ability to say that when you don’t actually know what it is that I’m holding back. I get that perhaps it’s meant as comfort and reassurance, but when I’m the only one who knows everything and if I’m afraid of being sectioned happening, then that should be enough. Especially having experience of being sectioned and so I have some level of understanding and appreciation as to what might influence that to happen. And so, other people not knowing exactly what is going on, should mean that my fear of being sectioned isn’t even really up for debate.

2.       You haven’t ever been sectioned so you don’t understand why that would be a fear… This person doesn’t know what it’s like to discover that all these professionals have come together to section you and have included the absolute minimal amount of involvement from you! For them to do it in – in my opinion – a very sneaky and sly way just leaves me feeling very uncertain in trusting professionals and I lack any sort of confidence in predicting their actions. I mean every single time I’ve been sectioned I’ve not once agreed that should happen and for each occasion, I’ve not once even worried or suspected that they were going to do it, so it’s left me feeling the need to be ‘on-guard’ all the time! I mean, even if I’ve had no contact with them, if I’m in the bedroom and hear a car door slam in the car park behind my house, I’m almost always convinced it’s either the Police or the Crisis Team! And I don’t meant to sound like a drama queen or like I’m exaggerating, but it’s all genuinely just been since the last time I was sectioned in February 2023, because for that; everyone had congregated in that carpark.

This whole thing is kind of a reminder of my thoughts around my medication right now… So, a little while ago, the Crisis Team had my antipsychotic medication increased and initially, I took it and everything was great again – I was happy, I was safe, I was attending all my appointments, and being productive at home with my work, blogging, and online learning etc. But then, before the medication really had the chance to build up in my system, I began having suspicious thoughts about it and so I stopped taking it – well, initially I just tried to take it as often as possible, but the belief built, and eventually, I stopped taking it completely.

I think that the most frustrating thing around my medication and my difficulty taking it, is that my fear and terror about it is so much more real and powerful than the recognition that actually, if I do take the medication, then it very likely could actually get rid of the thought entirely! And the evidence for this is from the fact that it has actually worked like that for me before. It’s annoying that I can see both sides, and that as massively as I want my head to be quieter and safer, I’m too terrified of the risks of taking the medication for that mindset to be good enough to persuade me to take it…

Last weekend, a strange thought (part of the psychosis) came into my head and without thinking twice, I acted upon it and almost before I knew it, I found blood spurting out of me! Because it hadn’t been ‘self-harm’ or a suicide attempt, I called an Ambulance and after a bit of backwards and forwards to two different hospitals, I finally saw a Plastic Surgeon who concluded that I’d severed my radial nerve and explained that because it had already been damaged before this, she felt it wasn’t really worth repairing it because it could traumatise more structures around it in the process, it wouldn’t never get back to perfection, there would be infection risk, and what if I were to hurt that place again? Whilst I obviously don’t want permanent nerve loss, the surgeon went about explaining her decision to me very well and I feel like I understand and appreciate her thoughts, feelings, and opinions about it and that I’ve come to accept it.

My acceptance though, comes from the sheer and blunt recognition that there’s literally nothing I can do to change things. It’s also about the fact that the alternative feeling to the acceptance is the frustration I feel with the thought and realisation that despite the fact that I now know those strange thoughts were completely far-fetched and untrue, I still have to cope with the consequences of what I had done when I had been fully convinced of it. And to be perfectly honest, the idea – or fact – that I need medication to help me to not think something as random as I did was real and to not act upon it in the way I did; is pretty damn scary in itself!

So, moving forwards… I’m trying harder to take my medication and I’m trying hard to make myself feel ready to work with my CPN on the formulation which will see my diagnosis officially change to Psychosis and therefore open new options in terms of help, support, and treatment.

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