“Be
spectacularly great at what you do. Wear your passion on your sleeve and hold
your heart in the palm of your hand. And work hard. Really hard.”
Robin
S. Sharma
A number of years ago, I was asked to attend and blog at an event at a local University, and ever since, I’ve kept in touch with the Doctor who invited me. Then, a few weeks ago, she got in touch with me and offered me one of the largest and most prestigious opportunity that I think I’ve ever been offered – an invitation to speak at the National Conference for the Royal College of Emergency Medicine! It was one of those situations where you try to play it cool and act like things like this happen all the time… But actually, all that coolness went out the window and I just said: “oh my goodness! Are you serious?!” After a few emails with the lovely Conference and Events Officer, and confirmation of my train tickets and accommodation, I asked if I could announce my presentation on, I’m NOT Disordered and across my social media and was told “yes, please!” So, I’m going to use this opportunity to talk through a lot of the reasons why I’m doing this, to publish some feedback and comments from various professionals, and to provide some exclusive insight into my PowerPoint...
“What
impresses me so much, and I really mean this, is how you come up with new
angles and ways to approach a topic, and to use your experiences in such
positive ways.”
Martin
Baker of www.gumonmyshoe.com
The Fundamental Reason For My
Presentation: Balance
In the
very first message from the lovely Doctor; Jo Darke (who you can follow on
Twitter here),
she explained that one motivation for asking me to speak, was actually because
she knew I have both negative and positive experiences of emergency
medicine/A&E. So, from the beginning, she made it clear that it's going to
be important to share both sides, and I really liked that because a sense of
balance is something which I generally massively appreciate in my life. I’m
also a huge advocate for hearing multiple points of view and experiences
because I recognise that good or bad, you can always learn something.
Having
had to make complaints – mostly against the Crisis Team, though! – one of my
largest motivations for doing so, is the hope that professionals and services
will learn from it. I always sincerely hope that it influences them to make somewhat
of an effort to avoid repeating whatever response, attitude, or actions they’d done
which played a huge role in the creation of that negative and detrimental
situation. My hope for them improving all those things that they had gotten so wrong
with me, is that it will mean no other service user or patient finds themself
in the situation I was in. I very rarely make a complaint with the sincere and
only hope that someone will receive some sort of disciplinary actions or lose
their job! I’d far sooner receive an apology and the recognition that it won’t
happen again.
Alongside
balancing my experiences, another element of balance which is illustrated in me
simply being asked to give a presentation, is about equality too. Equality
between professionals and service users/patients. Unfortunately, it’s all way too
easy to feel or to be made to feel interior, insignificant, and dismissed by a
whole host of professionals! One thought I often struggle with around this
topic, is when the professionals are younger than me, because it leads to a
whole host of thoughts and feelings that are about me being a failure. Over the
years, I’ve really struggled with the notion that my mental illness, self-harm,
suicide attempts, hospital admissions etc being a complete waste of my time. A
waste of my life. So, I look at a Doctor who’s maybe even a decade younger than
me and feel that they’ve achieved so much in their life and that I have nothing
to show for my own. A thought which I’ve found really helpful for confronting this,
is to recognise that I have made achievements – they just look a lot different
to those of a Doctor(!), and that actually, none of them would have happened if
I hadn’t gone through all the hardships
So, to
have such a hugely influential organisation like RCEM offer me the opportunity
to do this speech, is sort of a comforting reassurance that actually some of
those professionals do recognise patients and service users as being valuable
and worthy of having their voice heard. With that in mind, when I was in a
recent meeting with the Waythrough Life Experience Council, I told everyone
about this event. And the reason why I did that was because in previous
meetings, a lot of members have recounting negative experiences in A&E, so
I hoped that they would receive an equal amount of reassurance and comfort that
I had in that same notion of it being a sign that there’s some sort of recognition
of equality and respect. That it illustrates somewhat of an understanding and appreciation
that there’s room for improvement when it comes to mental health and emergency medicine.
And I’m a full believer that having that recognition, is the first step in the direction
of actually making those changes and improvements! So, ultimately, it brings a
huge sense of hope!
“Your
heartache is someone else’s hope. If you make it through, somebody else is
going to make it through. Tell your story.” (Kim McManus). Your courage in
sharing your journey has helped support countless people, and who knows how
many lives it’s helped save! No matter how hard it gets for you, your immediate
thought, next steps, and actions have been, and still are, to help people,
change things, and make the world and everything in it a better place for
others – inspirational doesn’t even come close to describing what you are!”
A
joint statement from both Debbie Henderson, Director of Communications and
Corporate Affairs and James Duncan, Chief Executive of Cumbria, Northumberland,
Tyne and Wear NHS Foundation Trust
My First Experience of Mental Health
Care in A&E
With the
recognition that this presentation is pretty much all about my A&E
experiences, I thought it made sense to chat through the very first one I had…
In 2009
I had a weekend job at a local retail store, and I think that people
underestimate just how stressful that can be! Initially, I began as temporary
staff for the Christmas period, but the company kept me on after my contract and
in doing so, they trained me to take charge of the fitting rooms. Now, on a
good day, there were three staff working on that part of the store, and on a
bad day; I was alone and doing the work of three people! I also received a lot
of abuse from angry customers who couldn’t appreciate that I needed to keep
hold of particular items in their baskets that they couldn’t take into the
fitting room. On the tills, there was a bell beneath each one and you could
ring it three times to alert Security… There was no bell on the fitting room,
and it was at the very back of the store!
So,
whilst my trauma of the abuse and rape I experienced when I was younger playing
a huge part in the deterioration of my mental health, I think that the stress
from this job was really ‘the straw that broke the camel’s back!’ I was leaving
the store one day when I heard a man’s voice telling me that I was useless and
to kill myself. I remember getting such a fright and looking all around me to
see who’d said it but there was no one else there. I tolerated that voice
saying the same thing over and over for ten days before I made my first suicide
attempt on the day that I also had 3 exams at School. I eventually collapsed in
School and was taken to hospital in an ambulance, but I didn’t want help or to
be saved, so I ran away. The Police tracked me down when I’d almost reached a
nearby town centre, I was detained under their powers of Section 136 of the
1983 Mental Health Act and taken back to hospital.
I
remember being so resentful at the A&E staff for calling the Police and
when no one explained to me what was happening or even what might happen (regarding
both being sectioned, the assessment that would now take place, the blood tests,
and the treatment for my suicide attempt), I clammed up and hid under a table
in the room I was sat in with a Police Officer! My inability or refusal to
explain why I had made the attempt ended up meaning that in my Mental Health
Act assessment, I was detained under section 2 of the Act and after being
restrained and sedated to undergo the medical treatment, I was transferred to a
local psychiatric hospital. And the fact that the psychiatric hospital is a
completely different NHS Trust to A&E, played absolutely no impact on me
blaming everything that I experienced in that hospital on the A&E staff who
had sent me there. This is really the first example to the fact I developed an
attitude where I took no responsibility for my actions – if I did something, I’d
say that I only did it because you said that or that it was all because such and
such did this. I never recognised the fact that I could cope in different ways
and that no one was forcing me to utilise the unsafe coping methods I had
turned to.
“The
key thing here is that it really personalises the experience you had, gives the
specifics and is hopefully something that will help shape the responses of
those involved in treating mental illness, as it gets to heart of the
situations you faced. Not only that, but it provides context to your own
personal experience. The design of the presentation has visual impact; the
photos of you in hospital are a stark reminder of how seriously those who have
a mental illness should be treated by professionals.”
Kyle
Northern, Communications and Marketing Director for Shake My Hand
Responsibility Should Be A Mutual
Agreement
My
admission of blaming A&E staff for everything that happened – which I felt
they had set in motion, brings me onto the topic of responsibility; and it’s something
which I talk about in my presentation. It’s actually – after a basic
introduction to myself – the first thing I cover, but I do it from a completely
different angle and instead, I use it to talk about how patients and service
users can often say things that they don’t mean… The title of the section is
actually: ‘We Say Things We Don’t Always Mean.’ To illustrate this point on the
PowerPoint, I’ve added a photo from when I was on life support after a suicide
attempt in 2012 and then I have inserted a quote on top of it of the last thing
I said before I was put to sleep: “I hope something goes wrong, and I die
anyway.”
The
reason I wanted to include that things are often said without a whole lot of
thought, is because I think it’s played a huge part and had a huge influence on
my journey of mental health care in A&E. There have been countless occasions
where I’ve said something in the moment, and I’ve been treated without any consideration
into the fact that I might have not meant it – or that I only meant it in that
situation. In failing to question or doubt what I’ve said, professionals have
then often made decisions that, can have an incredibly long-lasting impact… For
example, if I’ve said that I don’t want treatment and want to die, and I’m
deemed to have the capacity to refuse treatment, I could be discharged from
hospital without it. But I could get home and in a matter of hours I may feel
different, but by that point, it’s too late for treatment to make a difference!
That
example can be a particularly tricky instance in so far as determining
responsibility, because should the professionals be responsible for at least questioning
what a person is saying in a difficult moment? Or should that patient or
service user be fully responsible for any thoughts and feelings they’ve
expressed? Should they be responsible for speaking without full intent?
There’s
also been countless instances where A&E staff have made mistakes – of
various levels of seriousness and having a whole variety of impacts on me – and
I honestly think there was maybe only two occasions where those staff actually
accepted and took responsibility for their errors. One instance was when I had
run away to a different city, and I was in their hospital for the first time and
had just had blood tests to determine whether I needed medical treatment for
something I’d done to myself. Then a Doctor and Consultant came over to my bed
and were saying that my results showed I hadn’t even done what I’d said, and he
was saying “I know people like you, you all just do this for attention!” I persisted
in my admission of what I’d done and told them to do another test, so they went
away and when just the Doctor returned, he stared at the floor looking
humiliated for a while before explaining that they’d actually gotten my blood
results mixed up with another patient’s!
I mean,
he ended up saying all the right things in terms of apologising – not a single
word of it sounded genuine though! But then, when they said my blood tests had
shown I needed a treatment which I’m allergic to, I requested an antihistamine
before starting the treatment because if I have one, I actually have little to
no allergic reaction to it. But it seemed that the Doctor hadn’t learnt from
that first instance and refused to give me the antihistamine – despite me
explaining numerous times that I wasn’t refusing the treatment(!), I just needed
something in order to have it – and began the treatment with it… I ended up in
resus because I went into anaphylaxis shock and my throat swelled up to a degree
that was close to me being unable to breathe. I suppose you could say that I’m still
waiting for an apology for that one!
I think
that my largest bug bear with responsibility and professionals/services not
accepting it, is the fact that they are the exact people who are consistently
and persistently telling us service users and patients with mental health
problems, to take responsibility for our actions! I mean, it was a message that
the Crisis Team in particular, constantly drilled into me at absolutely every
opportunity – even those instances where it wasn’t even relevant! If I’m being
honest, probably the most difficult thing about those lectures from them, was
that they were right! It was often like rose-tinted glasses in that I would typically ignore or dismiss anything
that hinted that I was wrong to hold others responsible for my actions.
It took
me years to finally learn to recognise the difference between someone else’s
actions influencing your thoughts, feelings, and behaviours, and someone else
actually being 100% responsible for those things occurring. Like, you can’t
control someone else, you can’t stop someone from hurting you or treating you
poorly; but you can control your reaction to it. A really difficult part about
this concept, however, was that I’d always held the belief that if I felt I had
a choice, I would never ‘choose’ to self-harm or make a suicide attempt or even
engage in any remotely negative behaviours. So, if I was to say I was
responsible for doing those things, it would be like saying that I’d been faced
with a decision as to whether or not to do them. As though I could’ve just
opted out! To get through that thought process, I kind of worked my way around
it by considering the alternative mindset of the fact that no, whenever I’ve
hurt myself in some way, I’ve 100% felt that I didn’t have a choice or an
alternative. So, I came to thinking that my responsibility in these situations,
actually lay solely with the fact that I didn’t make a single ounce of effort
to look into nor even consider looking into(!) learning alternative coping
strategies.
Unfortunately,
I didn’t experience reflection or gain insight into these thoughts and feelings
around responsibility until after those three or four years of refusing to take
responsibility for anything! It actually wasn’t until after my suicide attempt
in 2012 when I was sectioned again and admitted to that specialist psychiatric
hospital to undergo Dialectical Behaviour Therapy (DBT0). Through DBT, I was taught
the general (not just referencing self-harm and coping skills) importance of
acknowledging any sort of part you’ve played in a situation. I saw the respect that
you can gain by taking responsibility and I experienced the sense of achievement
that can come hand-in-hand with you accepting that you have contributed – in
whatever way and to whatever degree – to a situation that you might find
yourself and professionals/services in.
“I
wish I could be there in person for your presentation. I can guess from the
slides how powerful and insightful it will be, but I’m sure that your authentic
delivery will play a big part in connecting the message with the audience, in a
way that has a lasting impact.
I’m
reflecting on your work and activism as a whole. While your Campaign, your
participation in Waythrough’s Life Experience Council, your blog, and your
events work may look like separate projects on the surface, there is a strong
message running through it all. That message is that people with first-hand
experience of treatment systems hold the key to improving those systems.
Not
everyone with those first-hand experiences has the skills and confidence to
give a presentation to a room full of emergency medicine experts. But everybody
deserves to be heard. My hope is that RCEM members keep on listening to and
learning from patients long after your presentation.”
Joe
Alderdice, Inclusion Manager for Waythrough
Insight & Education Can Be Huge
After
learning this, it made any poor treatment I received from A&E staff even
worse in a way because nine times out of ten those professionals who were
mistreating me didn’t accept responsibility when confronted for their mistakes,
errors in judgement, and lack of compassion, empathy, kindness, care, and
support. It really instilled a sense of hypocrisy in me and that promoted the
us vs them culture that I was both already aware of and had already witnessed/experienced.
I think
that a huge factor in the mistreatment I began receiving was that it seemed to
come almost immediately and directly after one of my discharge summaries stated
that I had a possible diagnosis of Borderline Personality Disorder (BPD). When
I saw the discharge summary mentioning BPD, I asked my Community Psychiatric
Nurse (CPN) if this was going to be my diagnosis and she said, “I don’t want to
give you that label yet because once you have it, no services will touch you because
no one gets better from that.” This was a prime example of the stigma and
misunderstanding around BPD that was so rife amongst professionals and services
in general. It’s also a good illustration of the fact that even the mental
health professionals didn’t hold much understanding, empathy, or compassion for
those with a Personality Disorder diagnosis… so why would A&E staff have
those qualities when they even have less education and training in mental
health?
After
my 2012 suicide attempt, I was sectioned under the 1983 Mental Health Act and
admitted to a specialist psychiatric hospital 100 miles away from home, my
family, and my friends. And the whole reason to send me there was because my
local mental health services were finally realising – at a point where they
said my records show I’d been admitted to hospital over 60 times in three years(!)
– that someone with a BPD diagnosis, really does need specialist help, support,
and care in order for it to actually be efficient and effective.
The
staff of that hospital provided a really huge example and illustration of how
education and understanding can be so beneficial in supporting people who have
a diagnosis of BPD. Because being staff in that hospital, meant undergoing
relevant training on certain things and in certain ways that would be most
effective for caring for someone with BPD. For example, they were all clued up
on DBT and the skills it teaches and encourages you to utilise in particular
scenarios and in response to particular thoughts, feelings, or experiences;
because it’s the recommended treatment for people with BPD. I really like that
they had this knowledge because it was similar to the whole responsibility
thing in that professionals should be role models and inspirational. So, if I’m
having to sit in all these Therapy sessions and do the group activities and the
DBT ‘homework’ then I expect – or at the very least, would want – those
professionals around me, to have at least a basic knowledge of the material
they were pretty much shoving down my throat!
‘You’ve
also come such a long way in your journey and have done so many positive things
with your experiences including your blog…’
Dr
Jo Darke, Conference Lead
A hard
and sad factor about having to go so far away for this actually helpful care
and treatment, was that one of the staff in that hospital actually commented
that if I’d lived in their locality, I’d likely have been admitted after my second
hospitalisation… It wouldn’t have taken sixty admissions or to have almost lost
my life! That was frustrating to hear; but I try to focus on the fact that at
least I did get that help, and I also really like to hold the belief that I
wouldn’t be who I am today without all that I have experienced. And I’m finally
at a point in my life where I’m actually very happy with who I am and all the
things I have achieved and which I am achieving. Being offered this incredible
opportunity to be able to provide insight from a patient’s experience in a way
which really could help so many others? Well, it makes all those hardships
completely worthwhile!
"I'm Robert Hirst, I'm one of the Emergency Medicine Trainee Association (EMTA) Co-chairs. As one of the co-chairs I oversee the EMTA committee, and as the only person who lives in Bristol, I'm helping organise the run and the social! In addition to this I'm doing a talk on the conference about personal identity and the work we undertake outside our shifts and a update from the chairs The conference has a number of great speakers and is perfect for anyone who is interested in emergency care in the UK, is working in emergency care, or just wants to see a diverse programme full of interesting speakers. An area conferences have historically neglected is hearing from patient perspectives, and I think this is a really important area for us to be exploring. Speakers like Aimee Wilson draw from their lived experiences of emergency care which can help us realise how the care we deliver is received. I'm really looking forward to the conference and from hearing from Aimee's presentation in full!
If you're interested in emergency care, work in emergency care and want to hear some great speakers, come and join us in Bristol on the 26th and 27th February.
Grab your tickets from https://rcem.ac.uk/events/emta-conference/… before the 12th of February.
Hope to see you there!"
Dr Robert Hirst,
Co-Chair for the EMTA Committee