"Good fortune is what happens when
opportunity meets with planning."
Thomas Edison
On a bi-monthly basis, Cumbria, Northumberland, Tyne and Wear NHS Foundation Trust (CNTW), host a Service User and Carer Reference Group (which you can read more about on their website; here). For October’s, I attended as a Lived Experience Reporter for the first time and with the idea that I’m NOT Disordered probably has hundreds of readers who attend big events, I have put together this blog post, where I’ll talk through all the ways – emotional and practical – in which I’ve prepared for this NHS event, as well as some advice…
Context
& Basic Information
CNTW have
this group of service users and carers who are part of an Involvement Bank
(which you can read more about on the Trust’s website here). Then, when staff or a ward or department want the input or opinion of
a service user or carer on something, they put together a bit of a job advert,
the Bank circulates it, and the service users and carers apply for the
activities they’re most interested in and best suited for.
So, on
August 18th, 2025, the Bank sent out the opportunity to be a Lived
Experience Reporter. This brand-new initiative was described as: ‘this exciting
new role will enable people to develop new skills and experiences including
writing news reports, interviewing people at meetings and co-designing
newsletters.’ Now, I think that even if you’re new to the blog – even if this
is the first blog post you’ve read on, I’m NOT Disordered – you’ll be
unsurprised to hear that I immediately applied for the opportunity! And it’s
not just about my obvious love for writing; there’s one million and one other
reasons too – here’s five of them(!):
1.
It’s an
opportunity to be creative in writing in a different style and format.
2.
A chance
to do some networking and meet new people.
3.
The fact
that it’s generally good experience to add to my CV.
4.
It gives
me the ability to help and contribute to the Trust that have saved my life.
5.
I might
learn new skills and find inspiration that can be utilised on I’m NOT
Disordered.
On September 25th,
I received the email from the Bank to say that I had been selected for the
opportunity and my details were forwarded to the amazing Activity Lead! Unlike
most opportunities with the Involvemet Bank, the Reporter one was actually for
a number of people with the intention of building some sort of ‘News Team’ with
multiple Reporters. So, on October 1st, we had our first team
meeting and I thoroughly enjoyed myself!
Each person on the
Team, has different skillsets, interests, passions, experiences, and education
so it meant we could each contribute in different ways and with different
elements e.g. one person was especially interested in newsletters, and another
had just completed her Master’s at University so she was used to essay writing.
It meant we all had different ideas too on how to build on this new role and
where to go from there with it. The decision on what was next resulted in myself
and another Reporter agreeing to be the first ones at the next Reference Group
event and a decision for the Activity Lead to host a training session for
everyone.
A number of years ago,
my Mum taught me about the ‘shy bairns get nowt’ mantra and it’s something I
massively use in my blogging career. It’s ended up being really helpful because
I never used to be someone who would blow their own trumpet, but over the years
of blogging and working in communications and marketing, I’ve come to recognise
that if you don’t or can’t do that (blow your own trumpet), you won’t get far
in this industry at all! So, with that thought process in mind, I ended up
sending the Activity Lead an email telling him about my education and
qualifications in writing – especially my Diploma in Freelance Journalism from Centre of Excellence – and offering to help with the training in any
way. In the email, I added that I didn’t want to step on any toes, I was just
really passionate about it and was trying to be useful. Fortunately, the
Activity Lead came back with the offer to send me the slides for the training
and get my thoughts and input and in the end, he asked me to co-facilitate it!
After the training,
the Activity Lead sent me a lovely email where the beginning read: ‘I wanted to
thank you for your support with co-producing and co-delivering today’s Lived
Experience Reporter training. You were an absolute natural in facilitating today,
sharing your own experiences whilst listening to and supporting other people.’ That
was such a lovely piece of positive feedback and I felt incredibly grateful for
it. Having that boost of support meant that when it turned out on Monday (6th
October) that the other Reporter who was meant to attend the event with me, had
pulled out of the project, I still felt able to attend and fulfil the role
solo.
Now that you have the
full picture, let’s get into the point of the blog post – to share with you the
ways in which I have prepared for the event…
Training, Education , & Research
Ensuring your skills
and knowledge are up to scratch – or at least ensuring that you feel
that they are up to scratch! – before attending an event can be really crucial
to solidifying your confidence at it. If you feel you understand the topic that
might be up for discussion at an event you’re attending or that you are aware
of a lot of different elements to it, then you’re more likely to contribute to the
event – in whatever way is relevant/applicable; but which is particularly true
where it comes to you having the courage to ask questions of speakers.
I feel that people who
demonstrate stigmatised comments and behaviours – particularly around mental
health – is actually less about a person being genuinely nasty and spiteful,
and more about them just not understanding it. Having no personal or even indirect
experience of something nor having the courtesy to try to learn about it despite
that lack of experience, can lead to someone feeling and being incredibly
ignorant and often mistaken in terms of their words and actions. Often, having
experience of something – or even just having a loved one or friend with
experience of it – can leave a person feeling interested and passionate about
learning more about it. It can make you curious and eager to develop or nurture
a greater understanding and knowledge of it because equal to a lack of
knowledge causing stigma and fear, having knowledge can bring feelings of
reassurance and comfort.
When I was first
diagnosed with Borderline Personality Disorder (BPD) in 2009, well no one has
even mentioned it to me, I only found out it was being considered because on a
discharge summary completed by hand, in the box reading ‘diagnosis:’ a
Psychiatrist had scribbled ‘BPD?’ Literally, the question mark too! Now, back
then, I feel I was a completely different person, and I spent a lot of time
practicing avoidance with difficult things in my life, and so I was reluctant
to do any research to try to learn more about BPD. These days, if I were in a
similar situation, that – researching it – would likely have been the first
thing I’d have done – in fact, it would have felt more like instinct than
choosing to do it or considering whether to do it or not.
So, I did precisely no
research into the acronym and that probably ended up being for the best because
it meant that when a Psychiatrist finally decided to conduct a diagnostic
conversation, I was none the wiser and that meant my answers were 100% honest
and truthful. I mean, BPD had – and still does to some degree – a hugely bad
stigma around it that I think if I’d known the questions I was being asked were
determining which symptom I had and whether I had at least five of the nine
possible ones (the diagnostic criteria was to have at least five of nine symptoms),
I may have lied in order to avoid being given the label. Not having that
knowledge or awareness meant that I didn’t hide anything or lie and so I ended
up being diagnosed as having all nine symptoms (my perfectionism literally knows
no bounds sometimes!).
Once I had the
diagnosis though, I did start looking into it and finding out more about it and
I think a huge motivation to do that, was the recognition that almost
immediately after being diagnosed, I found myself being defined by it! To the
point where, if someone was introducing me to another person, it’d be the first
thing said about me! Like “this is Aimee, she’s got BPD.” And do you know what
was really sad about that? The fact that I understood why that was happening. I
understood that I was so lost in those symptoms that acting on them – obviously
particularly the symptom around self-harm and suicide attempts (worded more
precisely on the NHS website, here) – was
like a 24/7 thing! Like a way of life, almost. To a point where I fully
accepted the idea that it was going to end up defining my death too. That I
would be known as the girl with BPD who committed suicide. And again, such a
different person these days because the idea of that being my reputation and my
lasting impression on the world, makes me feel actually sick. Sick and sad. And
motivated! Motivated to do better and to do more to work my ass off at trying
to massively defy that. To defy it to a degree where even my worst enemy would
have to agree that there was more to me than BPD and suicide attempts.
In 2012, three years
after being diagnosed with BPD, I made a suicide attempt that led to me being
put on life support and – under the 2005 Mental Capacity Act (which you can
read more about on the UK Gov website here) – given
lifesaving treatment against my will. When I woke up, I was detained under
section 2 of the 1983 Mental Health Act (again, there’s more information on
that, here) and
transferred to a psychiatric hospital specialising in BPD and I became grateful
for my knowledge of the Disorder. It meant that I better understood that the
other inpatients had different combinations of the nine possible symptoms (no
one else was diagnosed with having all nine!) and so I could comprehend and
appreciate why there were so many clashes and confrontations between everyone.
Like, one person might struggle most with the irrational anger symptom, where
another person is more focused on thoughts around abandonment. And there’s one
symptom that’s literally about having unstable relationships, so what were the
chances that a group of girls with BPD were all going to get along?! But not
everyone seemed to understand why that was the case and I felt that my
knowledge on the Disorder really helped to give me that level of insight that
led to me feeling more prepared for the arguments and drama!
So, why tell you all
of that?!
I feel that this
experience of education and learning in so far as improving my understanding
and knowledge of the diagnosis, has ultimately been fundamental to my current
and consistently long-term attitude and opinion of education and things like
training sessions and awareness programmes etc. And it is that opinion which obviously
really contributed to and encouraged that email of mine which led to the
Activity Lead asking me to co-facilitate the Reporter Training. And so, when he
offered me the opportunity to co-facilitate the training with him, I had the
idea to go to the Freelance Journalism course and gather some of the module’s
contents to utilise as material for the training too.
So, in the Reporter
training, the main and – I think – most important bits we talked about were
around gathering quotes from event attendees and we did an activity around
open-ended question!
The part about gathering
quotes, was a bit that I had advised the Activity Lead to add to the training
PowerPoint and so he asked me to lead on that slide/bit. So, I talked about the
importance of two things when you’re speaking to others in this respect:
1.
Ensure you
have thoroughly explained in which way their quote will be used e.g. will it go
on social media or just in one issue of a newsletter? Or could it going in a
newsletter then lead the chance that it ends up on social media or the Trust’s
website too? It’s vital that this other person is aware of where the words will
go and how they will be used – when you reference their quote, what goal do you
have in mind? What are you trying to achieve by sharing their quote? And this
isn’t just about consent, but knowing these things could also help to inform what
the person says in aiding them in recognising what is more appropriate and
where their priorities should lie in what they want the prospective audience to
know. For example, if the quote were just going on social media, then the
person might consider what they’re happy for the general public to know, but if
their quote is going in an internal newsletter only, they may have different
thoughts on what it is ok to say.
2.
Have the
right credit for the quote. This might sound like a small and obvious element
but when I worked with the Newcastle Hospitals NHS Trust on their Mental Health
Strategy, they asked me to provide a quote for a press release. When I send
them my quote, I told them that if it is used, I don’t want to be referred to a
previous patient, that I’d rather be an Expert By Lived Experience and/or
mental health Blogger. They kept their word, when the Chronicle published the
press release, they referred to me as a mental health Blogger (you can read the
article on the Chronicle site, here). So, I told fellow Reporters that it would be essential that after
getting a quote, you confirm how that person wants to be identified e.g. if
it’s a Doctor, they may not want their first name disclosed, or someone might
not want you to disclose the CNTW site they are based at.
In the Training, there was another member of
staff present too who is actually the person currently, and who has been for a
long time, responsible for the way that this bi-monthly event is documented in
the newsletter that is emailed out after the events across a large, specific
mailing list. So, he showed us the current appearance and format of it and
described how they wanted to bring it more to life by including work from service
users and carers who were actually attending the event being described. I found
this – having different people who play varied roles in the same project – a huge
benefit to attending training sessions because it provides you – who might be
brand-new to the project – with additional insight and extra knowledge and
awareness.
What else came from
having that person there? I went away and did some research into newsletters –
their appearances and the best way of writing for them… So, for the most useful
link I found in terms of what it should look like, there was this one: 11
Top newsletter design tips, examples, and trends and then this one (The
Best Email Newsletter Tools of 2025), lists the best tools and websites you can use for creating your own
newsletter! And then the best link for advice on how a newsletter article
should be written, was: 11 Ways to Write a Good
Newsletter - wikiHow!
Thinking on it, I have written articles for a
newsletter before, in one of my roles with the Communications and Marketing
team of my local St Oswald’s Hospice. So, I drew some confidence from that, and
some from the research I had done, and it helped me to feel more prepared and
more capable of producing something that was up to scratch. I think my largest thought
that’s in the way of me being 100% confident, is the idea of what sort of work do
the Trust expect me to produce? Like, are they expecting a top-notch headline and
a description of the event or…? Do they expect something really creative and
imaginative or really practical and plain? And I think that considering what others
expect of you, is something that you just have to learn to move through.
It's something I’ve wrestled with for years through
my blogging career but, particularly, on Awareness dates. Where there was a big
Awareness date coming up – and especially where I’d posted on social media that
I’d be publishing content for it – I find that I get a lot of thoughts around
expectation and wondering what readers think I’m going to create and publish. And
doing the research for the newsletter article, really helped in this instance
because it gave me more confidence that I’m producing the right thing! It gave
me the confidence that if someone says, “I thought you’d do…” then I feel able and
comfortable now to say, “that wouldn’t be right for a newsletter.”
Unfortunately, with the newsletter being for that
specific mailing list, I can’t exactly advise you guys sign up to receive it
and see what I write and create, but what I will try and do, is ask if I can
take a screenshot when it’s all set in the newsletter and then share that on
social media (@aimes_wilson on Twitter and @imnotdisordered on Instagram!). So,
look out for that and I’ll see you in the next blog post!