The
Involvement Bank - Cumbria, Northumberland, Tyne and Wear NHS Foundation Trust
“Coming
together is a beginning, keeping together is progress, working together is
success.”
Henry
Ford
I
can’t believe Mental Health Awareness Week (MHAW) 2025 is almost at an end;
with today being the penultimate piece of content for the Week! Today’s post is
in collaboration with my local NHS mental health Trust; Cumbria,
Northumberland, Tyne and Wear NHS Foundation Trust (CNTW) and we’ll be looking
at the largest points of discussion around this Week’s theme of ‘community’ in
particular relation though, to the Trust’s genius creation and incredible
operation of their Involvement Bank…
What Is the Involvement Bank?
*The
following was inspired by and/or taken from the CNTW website*
The
Involvement Bank is a way for service users and carers, who are not paid
employees of CNTW, to work alongside staff to make changes to services. Those people
who join the Involvement Bank are known as Contributors, and can take part in
different involvement activities across the entirety of CNTW wards, services,
and departments such as:
- Staff interviews
- Research projects
- Staff recruitment
- Hospital inspections
- Working groups
- Sharing a personal story
The Community Concept Challenged by The
Involvement Bank: Us Vs Them
A
hugely unhealthy and debilitating culture around community that is incredibly
strong in the mental health world, is ‘us vs them’ and I think it’s typically
born or created from the fact that often, in psychiatric services, professionals
are doing something to a service user, and not necessarily doing
it with them. Primarily, I think it’s an equality thing in that it
really screams an obvious-ness that service users are somewhat inferior to
professionals – particularly in the sense of holding a lot less control over
their own life than that which mental health staff can have over it.
Being
told you don’t have the mental capacity to consent to or refuse something
occurring in your life – no matter how poorly you are – can feel demeaning,
patronising, critical, and scary. I mean, your very first thought most often is
not gratitude towards that person for realising you shouldn’t have power or
control over this – like there’s very rarely any immediate thankfulness for being
treat under the 2005 Mental Capacity Act or sectioned under the 1983 Mental
Health Act (MHA)! No, if(!) that does come; it tends to be when your section or
compulsory treatment etc is all coming to an end and you’re able to recognise
that had professionals not stepped in and taken the control they did, your life
could have either ended or at the very least, looked incredibly less positive
and productive than it does now because of their intervention.
For me,
it has taken some time before I have become grateful upon reflecting on
professionals using the Capacity Act of MHA to – in my opinion – take over my
life. I think that something which, for me, definitely contributes to how
challenging it is to be thankful; is that the aftermath of the majority of
those instances wasn’t exactly easy or pleasant! Yes, they’ve eventually become
helpful and ultimately, lifesaving; but there are things in life where you have
to make comparisons and consider balance… For me, sometimes, the horrible
moments of hospitalisations under the MHA or the difficult treatment
experiences under the Capacity Act, have outweighed the fact that I’ve
eventually been able to deem them as helpful.
Now, I
always talk about the importance of honesty in life but obviously particularly
in mental health and I like to think that literally all the content on I’m NOT
Disordered is not only written honestly but also has honest and genuine
intentions behind them. I’d like to think that having these qualities has
really influenced the blog’s popularity and success, and hopefully this
illustrates to readers that honesty really is a good skill and a positive and
productive way to live. So, with that in mind, I haven’t always had the
greatest of experiences with CNTW’s services (including inpatient wards) and I
don’t want readers to think that the fact we’re collaborating means I’m singing
their praises and that they’ve done nothing but help me…
The
thing which makes it really difficult to talk about, isn’t the worry that it
will cause friction with the staff I’m working with in putting this
collaboration together – because they know full -well of my negative
experiences and have been a huge part in using them to improve the service and
prevent those things from happening to other service users and inpatients. No,
it’s more about a self-conscious worry of appearing ungrateful; because as I
mentioned earlier; the Trust and its services have mostly and ultimately, been
lifesaving for me. And so, how do you point out negatives about an organisation
who have literally – and not just psychologically, emotionally, and
metaphorically – saved your life? Like, isn’t that the ultimate sign of
betrayal? Isn’t it the ultimate quality of someone who is ungrateful and
negative? Isn’t it a person who focuses on the bad things in life and never
sees or recognises and acknowledges everything that is to the contrary? That’s
not who I am. At all. And I don’t want to misrepresent myself and have readers
who don’t know me personally really misjudge and misunderstand me and what I’m
saying.
To be
perfectly transparent, in the sixteen years I’ve been in and out (but mostly
in!) the care of CNTW, I have had to make five complaints. One against an
inpatient ward, one against a Community Psychiatric Nurse (CPN), and three
against the Crisis Team (with one complaint towards them being purely because
they had repeated the behaviours they’d literally just apologised for from the
previous one!). I’d say that the two things which I find motivate me to
actually go to the lengths – because let’s face it, it isn’t an easy or
pleasant process – of making a formal complaint are:
1.
When
the incident – or instances – have left me feeling or being physically unsafe.
2.
When
I’ve been sure that if they weren’t corrected, the wrongdoings could be
repeated.
Now, I
say it isn’t pleasant or easy, not as a dig at the complaints process; it is a
tough and detailed one because it needs to be. Because it should be. It’s a
serious and significant thing to do – make a complaint against an NHS Trust or
service, and so it should be done through an equally serious and significant
process. I think that the hardest bit – and it’s something which isn’t isolated
to NHS complaints – is the act of having to repeat the details of a horrible
experience over and over and, often, to a complete stranger. It’s triggering
and – in very serious and emotional instances – can be re-traumatising. I won’t
put it on the same level as I found reporting the abuse and rape I experienced
when I was younger, but it has a striking resemblance and similarity. And,
having gone through those factors and qualities in my report for those
traumatic experiences, dealing with similar thoughts and feelings in a
complaint, can be a huge reminder of that too.
So, in
addition to the obvious impacts of affecting my mood and safety, instances that
I would deem negative – but haven’t necessarily made a complaint about – have
also left me often massively struggling to rescue any sort of trust I’ve held
in the Trust’s staff. I think that the hardest instance of this was actually
the complaint against the person who was my CPN at the time because I had grown
to trust her and confide in her over the months she’d been in charge of my
care. Developing this strain and challenge in my thoughts and feelings around my
relationship with the Trust’s staff, really enforced my opinion and feelings
around the us vs them culture. Thankfully, this is something that joining the
Involvement Bank has confronted and fully taken on as a challenge!
The
Bank has done this by encouraging the development of productive and positive
relationships between service users and staff through offering opportunities to
service users (and carers!) to partner with specific staff, wards, or
departments/teams and collaborate on a piece of work/a project/campaign/idea/meeting
etc. It’s actually funny – in a genuinely positive way! – that they tried to
list the types of opportunities that come up in the Bank on the website (the
bit which I copied at the beginning of this post!). Funny because the types of
opportunities could honestly make up an actually never-ending list! Like, they
can be so different, creative, unique, specialist and specific… But yes, it
would be fair to say that those listed – especially the staff interviews – come
up more often than some.
In
connection with that, what I thought to be a really good move on the part of
the Bank staff and their way of working, was that when I joined it, I was asked
which areas of the Trust I was most passionate about and interested in being a
part of and contributing to. This is actually something which you – if you
decide to complete the Expression of Interest Form that is linked at the end of
this post – will be asked to select on that Form too. And they honestly do use it
to not only shape the opportunities you’re offered/shown, but also to inform
their decision as to who is awarded an opportunity when there have been
numerous applicants for it. A piece of advice I will give here though, is that
when you’re answering this question, always keep in mind whether there’s an
area that you think you may develop an interest in. I say this because I didn’t
tick the staff interviews option and have since found myself wanting to apply
for those opportunities but being constantly unsuccessful because I haven’t
stated that I wanted to do them and/or because I now have no experience in
doing them.
In
doing this aspect of asking for your interests etc., the staff are really
recognising the importance of not only a person’s skill and qualification
level, but also how vital it can be to the quality and standard of their work
if they are actually passionate and interested in what they’re doing. Because,
let’s face it, your education and the subjects you’ve studied, don’t always or
necessarily reflect your passion, interests, life goals, or personality. I’d
like to think that the majority of mine do – simply because I learnt at School
that if I don’t like or care about something, I won’t do well in learning more
about it or being examined and graded on the quality and standard of my work
towards it. Which is why I’ve done numerous – mostly online via FutureLearn or
Centre of Excellence – courses in communications, marketing, social media, and mental
health.
To
provide you with both an example of the opportunities which come up and an
example of those which I’m interested in, I currently have three applications
in for opportunities. The first is to contribute to training around Personality
Disorders. Now, you don’t have to write any kind of application essay or
whatever when you register your interest for an opportunity, you can literally
just write that you’d like to be considered. However, when I’m really
interested in and eager to be given an opportunity, I tend to write a sentence
or two – sometimes a paragraph – about why I’d like to do it and the knowledge
and experience I have and could offer to the role available. So, in registering
my interest for this training one, I mentioned that I have recently had my
diagnosis of Borderline Personality Disorder (BPD) overturned due to the fact
that my recovery has meant I no longer meet the diagnostic criteria (you can
read more about it being overturned and how I feel I have overcome the
symptoms, in this blog post!). So, with that in mind, I
added that it means I can offer both the negative experience and the reality of
life with the diagnosis (as I’ve had it for sixteen years) and the positive
experience of recovering from it.
The
second opportunity I’ve applied for is to tell my personal story of my
experience with section 136 of the 1983 Mental Health Act. For those who don’t
know, this is the Police power under the Act, and it means they can detain
someone who they believe has a mental disorder, is in need of ‘immediate care
or control’ and is in a public place. Upon detaining someone, they must take
them to a ‘Place of Safety’ e.g. A&E or a 136 Suite, in order to undergo a
Mental Health Act assessment to determine whether they should be placed under a
different section to be admitted to a psychiatric hospital against their will.
To read more about section 136, there’s a really useful page on it on the Mind
website here. Again, because of my passion
and eagerness to be awarded this opportunity, I wrote a sentence or two in
registering my interest and stated that I not only had experience of being
detained under this section, but that my experiences were also negative and
positive and so I could provide a balanced view on it.
The
third opportunity I’m awaiting to hear if I have been successful in my
application for it, is actually again about contributing to training on
Personality Disorders, but for a different group of people/professionals. So,
regardless of it being a different audience, I pretty much mentioned the
details and information that I had talked about in my application for that
first training opportunity too.
One thing
I’ve recently noticed has been that on the adverts for the opportunities, there
is the deadline date of the date when you need to have applied by. There isn’t,
however, a part stating the date by which you will receive a response. Something
the Bank do in connection to this, which is really helpful, is that even if you’re
unsuccessful in your application for an opportunity, you still informed of
this. With numerous employment applications failing to do that, I’m experienced
in how it feels to just never hear back. I appreciate that for larger
employment opportunities, there could be a huge number of applications and
perhaps that makes it more difficult to inform everyone, but the Bank do it! Something
which I wish the Bank could do but which I think isn’t practical, would be if,
when you’re unsuccessful, they could let you know why. The Crisis Team from
this Trust taught me that something shouldn’t be deemed as a mistake or a
regret if you can learn something from it. And so, when I’ve been unsuccessful,
I feel that knowing why and seeing what I could change or improve on for next
time, would make the application more worthwhile and give it more purpose and
productivity. Like I said, this isn’t exactly a practical idea to sit down and
take the time to list a reason – or reasons – for each applicant.
One Lesson The Involvement Bank Have
Learnt
Now,
one lesson which I know for a fact the Involvement Bank have learnt because I
helped them learn it(!) was around both the way in which they phrased the
rejection (for clarity: by that I mean when you have been unsuccessful in your
application for an opportunity!) emails, and the lack of a feature in them.
This
lesson came about after the Bank circulated an opportunity which involved –
what could be for a lot of people receiving it – a potentially trigger,
upsetting, and distressing topic/subject matter in the title and description of
the opportunity. As a result of this, I was contacted by a number of others who
are on the Bank and expressed their upset – with one actually stating that she
now felt unsafe in terms of how she felt she needed to cope with her thoughts
and emotions that were a result of the email. I immediately contacted the
Involvement Bank to point out the flaw and in receiving a response which, I
felt, didn’t really recognise or accept the magnitude of their wrongdoing, I
contacted a specific, senior member of the communications and marketing team (since
the email was technically a Trust communication). She immediately contacted the
Involvement Bank to voice her agreement with my thoughts, feelings, and opinion
and a senior member of the Bank staff contacted me to discuss the situation.
In our
discussion, I was asked what I thought they should do better things and to
rectify the flaw… My almost instinctual and immediate response was: “isn’t that
your job?” and “it’s not my place to tell you how to correct what you’ve done
wrong!” But instead, I thought on it because I realised that if they were
asking me then perhaps, they genuinely weren’t sure what they should do and
that actually, it was a positive thing that they were asking me about it. I
mean, they could have very easily thought: ‘we have no idea what to do, let’s
just leave it as it is.’ Asking me meant they were eager to try to improve and
were willing to listen to a service user in order to make those improvements. This,
felt like the ultimate sign of respect and equality so I felt very proud and
honoured to be able to provide the advice and recommendations that I did.
I
firstly gave my thoughts on the wording of those rejection emails because I
felt them to be fairly harsh, abrupt, unapologetic, unexplanatory (genuinely
surprised that turned out to be a word when I typed it and Word didn’t correct
it!), unproductive, and – in my opinion – more importantly, unsupportive.
I then also
made the recommendation that they begin leaving a message within that email
stating something along the lines of the fact that there’s the Community Mental
Health Teams (if you’re struggling within office hours and are already under
the care of the Trust’s Teams) and also contact details for the Crisis Team
(for those struggling out of office hours, who aren’t under a Community Team,
and/or who are at a point where they’re unsafe and can’t stay safe long enough
to wait for a call back from the Community Team). Whilst I don’t know what
might be happening ‘behind-the-scenes’ I’ve never received another message from
a fellow Involvement Bank member around struggling with an opportunity. So,
this shows a level of improvement and progress.
Previous Collaborations (including
previous to adding Cumbria Services, when the organisation was titled: NTW)
Mentally
Sound interview John Lawlor | 'Ad' | I'm NOT Disordered
Christmas
Q&A with NTW Head of Communications | I'm NOT Disordered
NTW
NHS sign Time To Change pledge | 'Ad' | I'm NOT Disordered
24hrs
with a Police Liason Lead for NTW NHS | I'm NOT Disordered
Mental
Health Awareness Week: Top Relationships for John Lawlor | I'm NOT Disordered
A
LAST MINUTE CHRISTMAS Q&A | 12 DAYS OF CHRISTMAS WITH I’M NOT DISORDERED |
I'm NOT Disordered
TIME
TO TALK DAY WITH I'M NOT DISORDERED | PART TWO | I'm NOT Disordered
TIME
TO TALK DAY WITH I'M NOT DISORDERED | PART FOUR | I'm NOT Disordered
LAUNCHING
NTW'S ADULT MENTAL HEALTH NETWORK | AD | I'm NOT Disordered
24HRS
WITH... PEER SUPPORT WORKER, LYNDSEY TUNNEY | I'm NOT Disordered
BLOGMAS
2022 | DAY ELEVEN: CHRISTMAS WITH… CNTW CEO; JAMES DUNCAN | I'm NOT Disordered
Finally,
if you meet the criteria (detailed here)
to be a member of the CNTW Involvement Bank, you can download the Expression of
Interest Form below…
I'm interested in joining the CNTW Patient and Carer Involvement Bank
