June 12th 2020, I was
discharged from my Community Mental Health Team (CMHT) after being under their
care (on and off) for eleven years! Now, I’m very aware that with my audience
being so big there are readers who don’t have a lot of insight into mental
health services and therefore may not appreciate just how big an achievement
discharge is. And that is the aim of this blog post – to provide insight and to
educate readers about mental health services…
You can be referred to Services in various ways…
I
was eighteen when I was first allocated a Community Psychiatric Nurse (CPN); I
was sort of lucky in the way I first came into contact with Services because I
didn’t have to be referred and sit on a waiting list for months on end.
However, I was definitely unlucky too, in that I was only put under the care of
the CMHT because I had attempted suicide and been sectioned under the 1983
Mental Health Act, and apparently the automatic aftermath of being sectioned is
that you’re allocated a CPN upon discharge.
I
recognize my luck in the situation because I know of the many instances where
people have been referred to their CMHT through their GP and have then had to
sit on a lengthy waiting list. The saddest thing about the waiting lists is the
fact that all too often, the person’s mental health deteriorates to the point
where they attempt or succeed at committing suicide. This happens for a number
of reasons, but the main one is that there’s often the development of feelings
of hopelessness and a conviction that Services don’t care enough about the
person to rush through their referral through.
Something
I don’t often talk about is that I was actually referred to Child and
Adolescent Mental Health Services (CAMHS, now referred to as CYPS – Children
and Young Persons Services) when I was 15. At the time, the abuse was happening,
but no one knew; so, I self-harmed, but the reason I was referred was because I
was being bullied. I was on the waiting list to have an assessment with someone
for so long that the bullying had actually stopped before the appointment
eventually came through. It does make me wonder though; would my mental health
have deteriorated to the point that I did if the referral had been quicker? And
would the abuse have continued as long as it did? Or would I have ended up
confiding in my CAMHS worker and have them support me to report it?
You
can have several different professionals involved in your care whilst under
Services…
Having
been under Services for so long, it’s probably more than understandable that
I’ve had a vast amount of CPNs, Psychiatrists and other professionals (like
Psychologists and Occupational Therapists) involved in my care. When my mental
health was at its most poorly, every time a professional assigned to me care
would leave or change it felt like a whole abandonment and insult! I was so
paranoid that some of them were leaving because I was too complicated or that
they had grown hopeless and thought that I would never get better, that I would
get so upset and angry with Services on a whole.
I
debated whether it would be fair of me to use this opportunity to discuss the
professional who I’ve found the least helpful, but finally decided that I will
because I’m not using it as a chance to categorically slate the person and
their profession! So, on one of my very first admissions to a psychiatric
hospital under the Mental Health Act the ward staff and my Psychiatrist made
the decision to refer me to an Art Therapist who was based in the hospital. I
remember having one assessment with her and it was Winter, so I drew a snowman
and she said we had to talk about why I’d chose to make the balls of snow
different sizes… I was like “because that’s how you draw – and build – a bloody
snowman!” At the time, failing to find the Art Therapist helpful made me
question the judgement of those professionals who had mistakenly thought she
would quicken my mental health recovery and chance of discharge from hospital.
I wondered if they actually knew what was best for me or if I was being
pigeon-holed and them making assumptions on what would make a difference.
Mostly,
the basic number of professionals involved in your care is two; a CPN, and – if
you’re on psychiatric medication – a Psychiatrist. These two will then assess
whether there’s a need for other professionals and specialists to become
involved in your care depending upon various aspects, such as your diagnosis,
any trauma you’ve experienced, and your safety risk.
Some
Services aren’t always good enough to help or to make a difference…
About
three years into my mental health deteriorating, I was in a psychiatric
hospital when a Psychiatrist made a recommendation that would later, save my
life. He advised that I be admitted to a psychiatric hospital that specialised
in my diagnosis of Borderline Personality Disorder (BPD, but now referred to as
Emotionally Unstable Personality Disorder). This Psychiatrist was the first
professional to recognize and acknowledge that my local Services weren’t
adequate or efficient enough to aid my recovery and support me in improving my
mental health.
Immediately
after my discharge from his care, my CPN and community Psychologist began
searching for an appropriate hospital. They found three that were nearest in
geography terms; one of them refused to accept my flight risk (I used to run
away a lot!), another thought I needed something more intensive, and the third
agreed to assess me! On meeting with the Ward Manager and her Deputy, though, I
found out more about the day-to-day life on the BPD ward that was over 100
miles away and refused to go. Hearing about the incredibly structured routine
on the ward, was slightly terrifying and I was reluctant to commit to such
strict ways when the hospital’s average admission claimed to be 12 – 18 months.
Unfortunately
– or fortunately, depending on which way you look at it(!) – the decision was
taken out of my hands after a suicide attempt in 2012 saw me end up on life
support in Intensive Care, I was sectioned under the 1983 Mental Health Act and
sent to the specialist hospital. It took me a long time to adapt to being in a
psychiatric hospital for so long (my admission was two and a half years in
total!) and to have my days planned by the staff; but eventually I acknowledged
that being there really was saving my life. When a member of staff told me that
had I lived locally to the hospital I probably would have been admitted after
my first suicide attempt in 2009 and maybe my admission wouldn’t have lasted so
long and I might have never got to the point where I had needed to be on life
support; I was saddened to think that services really are a postcode lottery.
I
think that the reasons why being in a specialist hospital was the most helpful
thing for me was because it took away my freedom (which I was using to
self-harm and attempt suicide) and allowed the chance to undergo Dialectical
Behaviour Therapy (DBT) which was the recommended treatment and therapy for
people with BPD.
‘Discharge’
means something different to each individual…
Since
announcing that I’ve been discharged from Services, I was asked by someone what
that actually meant, and I was kind of surprised at myself for not considering
that some people may not know this! Then I realised that actually, discharge
can mean something different to different people and I can really only talk
about what it means for me.
So,
technically – for me – being discharged means that I’m no longer under the care
of my CMHT and I’m not assigned a CPN. Which mostly just means no more weekly
appointments with her! Being discharged doesn’t mean I’m without support for my
mental health though; I still have access to my local Crisis Team, I still have
a Social Worker, and I’m still under the care of Richmond Fellowship.
One
big change that is a result of my discharge, though, is that it means my GP is
completely in charge of prescribing my medication. Whilst under the CMHT my
Psychiatrist made the decisions around my psychiatric medication and would
instruct the GP on which medications I needed and what doses I should be on. For
me, this was a whole lot easier because I think it makes sense that someone who
is knowledgeable on such medications takes the lead on prescribing them! To avoid
confusion and the GP being kind of thrown in the deep-end, the CMHT are putting
instructions for my medication in my discharge letter just to tell the GP that I
need to stay on what I currently take (Fluoxetine, Mirtazapine, Aripriazole,
and Lamotrigine) and that there’s room to increase some of them.
Another
difference in discharge for each person is the reason for the discharge; I mean,
it’s pretty likely and obvious that it means the person’s mental health is
better and more stable; but there could be more to it. My discharge isn’t just
because I’m doing well, it’s also because I need to undergo Complex Trauma
Therapy and they won’t see me until I’ve have had at least 6 months stability and
without the involvement of Services. Initially, this didn’t make sense because I
thought that surely it should be the other way round and you should need to
have CMHT input whilst doing such therapy but the Therapists argument is that
if you need a safety net then you’re not ready to do therapy.
In
addition to all the technicalities of discharge, there’s also something to be
said about what it actually means psychologically to someone. for me, it means
freedom! And it’s a huge achievement! It makes me more hopeful for my future
and assured that I might actually have one that’s free of mental health services!
A
Psychiatric Hospital isn’t always the safest place…
I
don’t know how many times I’ve heard Police Officers or A&E Doctors and
Nurses disagree with the decision of mental health professionals who’ve deemed
that a psychiatric hospital isn’t the best place for me. I think that to some
people, it’s baffling to see someone who is feeling suicidal or who is
self-harming be told that they won’t be admitted to hospital because it seems
like that’s the obvious place for that person to get help and support and be
kept safe. However, sometimes and for a few reasons, a psychiatric hospital isn’t
actually the safest place to be.
I’ve
been assaulted twice in a psychiatric hospital. The first time I was sitting on
the loo in my en-suite bathroom when a very poorly patient let herself in and was
convinced that I was hiding her baby in my toilet. She then began trying to get
into the loo whilst I was on it! I screamed and pressed the emergency buzzer and
the staff came running to restrain her. The second assault was a sexual one and
was done by a man who clearly struggled with impulse control; because of the
nature of that assault, the Police were called but the man was deemed to be
lacking the capacity to be found guilty of the assault.
Another
way in which I’ve experienced psychiatric hospitals not being safe was when I was
in the specialist hospital. I quickly learnt that the other inpatients would
show one another their methods of self-harming and this escalated when someone
snuck a knife onto the ward and everyone passed it around knowing full well what
each person was doing with it. Knowing that they were supplying the other
person with what they needed to hurt themselves. Finally, the staff realised
after people were presenting with the same sort of injuries and the ward was
put on lockdown so that the entire place could be searched. But if you think
that was bad, things were even worse on the Psychiatric Intensive Care Unit
(PICU) upstairs; a psychotic patient ended up killing another patient through
suffocating them. Afterwards, everyone in the hospital had their leave from their
ward stopped until the journalists and camera crew left the carpark!
Being
prescribed psychiatric medication can be difficult…
I
remember when I first started psychiatric medication in 2009, the Crisis Team
had come to my Mum’s home (where I used to live) and decided to convene a
Mental Health Act assessment. I ran to my bedroom crying and one of the two
Psychiatrists required to section someone under the Act came up to talk to me.
He said that I believed it was time to start an antipsychotic medication for
the hallucinations that were telling me to self-harm and leaving me feeling
suicidal. I was admitted to a psychiatric hospital and began taking Aripiprazole.
With
it being my first psychiatric medication, I didn’t know/realize just how long
it takes for it to work or begin to help. I think it’s kind of wrong that it
takes so long because really, you need that help to manage your symptoms ASAP!
Kind of like painkillers; most tablets take up to half an hour – quicker if they’re
intravenous. It’s so sad to think that so many people have self-harmed or
committed suicide whilst ‘waiting’ for their psychiatric medication to make a
difference because they’ve either given up hope that things will change, or
they’ve become too overwhelmed and have begun to find things no longer tolerable.
Over
the following three years I was trialled on various different medications that
had very little impact on my mental health, until I was admitted to the
specialist hospital in 2012. In hospital every single inpatient was on some
kind of medication and when I was prescribed some I felt more comfortable
taking it because I knew it had been prescribed by people who saw me 24/7 and
not just on a weekly appointment. The hospital staff had a better idea of what I
was going through and by my discharge I was happy with my three psychiatric
medications.
When
I moved back into the community I had to register at a GP practice and on my first
assessment appointment with them, they said that they were shocked at how much
medication I was on at such a young age and that they’d really like to stop
everything! I can’t even begin to describe how much I cried at this! Thankfully,
I had my Richmond Fellowship support worker with me on the appointment and she
was able to explain to the GP why I was so upset and how important the medication
was to my mental health. The GP finally agreed to continue prescribing things
on the advice of my community Psychiatrist and when, after being back in the community
for a little while, I had a relapse they agreed to the Crisis Team’s recommendation
that I start another medication!
I
now take Mirtazapine, Fluoxetine, Aripiprazole, and Lamotrigine. I debated choosing,
which is the most useful, but I think that they all kind of work as a team! But
the two main ones – I think – are the Aripiprazole and the Mirtazapine. The
Aripiprazole is the anti-psychotic that has gotten rid of the hallucinations, and
after seeing the impact not taking it had in 2018, I’m more than convinced that
it’s necessary. Then there’s my Mirtazapine, which was increased about three
weeks ago after the wait for surgery on my torn tendon began to affect my
mental health. After just under two weeks, I found myself going to my bathroom
with a sharp and within seconds of sitting on the floor it was as though the thought
and feeling has just… gone. Like, I didn’t even have to try and cope with it,
manage it, get through it. The medication was working.
There’s
still mental health stigma within Services…
In
2009, I had ran away and had to see a Psychiatrist who asked me a series of
questions – I didn’t realize that each question corresponded to a different symptom
of BPD – and concluded that I should have the diagnosis of it. However, when I returned
home and saw my usual CMHT, I was told that they were reluctant to give me that
diagnosis because once I had the label, it was a ‘death sentence.’ They said
that once professionals knew I had BPD then they wouldn’t ‘touch’ me. Wouldn’t
help me. But I was eager to have a name for what was happening to me, to know
that I wasn’t alone and that there were others out there experiencing this. Others
who were recovering and getting better from it. I thought that having a
diagnosis would give me hope.
Literally
as soon as I was officially given the diagnosis, I was treated differently by
mental health and medical professionals. Before BPD, everyone was concerned and
caring. Afterwards? They were dismissive and unkind. I think that a huge reason
for this was the misinterpretation that people with BPD are overly dramatic attention
seekers who aren’t really mentally unwell in the same way as those with Schizophrenia
are. I guess that this misunderstanding and discrimination is the reason why
specialist Personality Disorder Services are required to support and help those
diagnosed with that. And it’s definitely a big reason why my local Services weren’t
adequate enough to facilitate my recovery. Fortunately, they’ve devised
specialist Services and those who aren’t specially trained e.g. staff in the
Crisis Team, are typically a lot more understanding than they used to be.
But
it isn’t just about stigma that professionals hold; when I was in the
specialist hospital, there was a PICU upstairs and everyone on our ward would
tell horror stories about what it was like up there and what the patients there
were like. It didn’t help when one of them murdered another one though… But it meant
that after running away from the hospital, attempting suicide, ending up on
life support, and being transferred to the PICU, I was absolutely terrified of
what was in store! I’d been in a PICU before but the horror stories I’d heard
about this one left me so anxious and pretty terrified that I cried and cried when
they told me where I was going.
How
it feels to be sectioned/under the care of Services…
Whenever
I’ve been granted leave whilst sectioned under the Mental Health Act, I’ve felt
as though I’ve had a giant sign on my head telling the general public that I’m
a detained patient! It didn’t help when they refurbished my local CMHT centre
and wrote on the new sign that it was for mental health services! I campaigned
and successfully had it changed to purely the name of the building so that the
general public didn’t know that if someone was going into there, they probably
had a mental health problem. It’s sad that we live in an age where having such
an illness could result in abuse and bullying, but it’s also reality.
I hope that this post has providing you
with some insight and knowledge into Services and what it’s like to be a
Service User!