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.
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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.
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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.