AN INSIDE LOOK AT CREATING A MENTAL HEALTH STRATEGY FOR AN NHS TRUST | IN COLLABORATION WITH NEWCASTLE UPON TYNE HOSPITALS NHS FOUNDATION TRUST | WORLD HEALTH DAY 2024

“The individual who says it is not possible should move out of the way of those doing it.”

Tricia Cunningham

Newcastle Hospitals (@newcastlehosps) • Instagram photos and videos

Newcastle Hospitals (@NewcastleHosps) / X (twitter.com)

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Newcastle Hospitals NHS Foundation Trust (newcastle-hospitals.nhs.uk)

Having been a blogger for over eleven years now, there have honestly been so many instances where I’ve found myself genuinely shocked and pleasantly surprised. These have varied from reaching reader milestones to being gifted items or complimentary experiences to being asked to give speeches at events. Also, in that list of shocking things has been landing collaborations with huge organisations such as Newcastle Upon Tyne Hospitals NHS Foundation Trust (NUTH)! Prior to the opportunity came up to help create and develop the Trust’s new Mental Health Strategy, it had honestly always – literally since Day One of my blogging career! – been a goal of mine to work with NUTH! I was surprised again when, after hearing about I’m NOT Disordered, the Trust asked me to also write some blog posts. So, as the Strategy is finalised this month – and because of it being World Health Day and the theme this year is ‘My Health, My Right’ – it was almost natural and automatic to write a blog post with some of the feedback NUTH’s Patient Experience team asked me and my fellow members of the Strategy’s Expert Reference Group to provide…

So, the first part to the feedback questionnaire was asking the Expert Reference Group what our expectations of the Project had been and whether these had then been met…

Now, having expectations – particularly around my mental health – is actually something I’ve struggled with and learnt a lot about over the years. On so many occasions I have gone into appointments and assessments with psychiatric professionals with certain presumptions as to the ultimate result or outcome of seeing them. Typically, this has been because in the beginning of my mental health deteriorating, I had such little knowledge or understanding of responses I could earn from the things that I was doing (such as self-harming). This meant that I was going into situations with people like Psychiatrists and the Crisis Team without expectations and that left me feeling completely unprepared for any response I was met by – even if I viewed it as being helpful! Which is why I’m now fully committed to the whole ‘prepare-for-the-worst, hope-for-the-best’ philosophy.

Whilst a lot of my thoughts and feelings on expectation were driven by the quality in a mental health scenario, I’ve also learnt about managing expectations in my blogging career because it has become relevant in a number of ways… But I think that the most obvious and most difficult way, has been in regard to my blog’s popularity and success. In creating I’m NOT Disordered, I had absolutely no expectations or even hopes that it would become all that it has today – especially in so far as the size of its readership and the opportunities it has led to me being offered and experiencing.

I mean, I started blogging to communicate better with my loved ones who were over 100 miles away from the psychiatric hospital I had been sectioned to after a suicide attempt left me on life support. However, as those on my private Facebook account began leaving comments and messaging me about how good my content was and how it had helped them in some way; I found myself starting to share my blog’s links on my public Twitter and Instagram accounts (@aimes_wilson) and from there… Well, I often describe that period of time between having tens of readers to hundreds of readers, as: “everything just kind of snowballed!”

I will say though, that my lack of high hopes for I’m NOT Disordered was more to do with being practical and realistic in believing that I wouldn’t ever share the link to many people, rather than it being more psychological and me being convinced I was going to produce terrible content. And do you know what the irony of that is though? It’s that when I ended up sharing the link to my new blog posts more and the readership grew, is when I then began worrying that my content wasn’t good enough or deserving of all this new attention!

With my general thoughts on expectations taken into consideration, this was my response to NUTH’s question:

After I applied to be a part of this project through the CNTW Involvement Bank, I was initially actually disappointed because it turned out there’d been so much interest that everyone had to go through an informal chat with someone from NUTH (mine was with Gemma and Dr Sarah Brown) before being officially allocated to a role with it. This meant that I was afraid I wouldn’t be chosen, so I was really happy and proud to be honoured with a position on the focus group.

In joining the Group though, I didn’t – not even for one minute – consider the idea or expect that I would end up being able to be more involved in a more communications and marketing sense through creating online content about the strategy on my blog (I’m NOT Disordered). So, when I mentioned my blogging in a focus group meeting, I was extremely happily surprised to have Gemma and Fardeen ask if I would be willing and able to write some blog posts about the various stages of the project and of course I jumped at the opportunity!

From looking at my blog’s statistics on a regular basis, I actually did have certain expectations as to the kind of response and level of interest our collaboration content might have from my readers, but even those which I held here, were wrong! All the NUTH posts have proven to be some of my most popular pieces from the entire eleven years I have been blogging.

Besides the practical expectations of the responsibilities, I might have and the time and energy I might have to put into working on this project, the thoughts I held around the idea of what I might gain from this were also wrong – I have benefited so much from this project!

The second question the Patient Experience Team put to the Expert Reference Group was asking what we feel we have personally gained from our involvement in this Project…

In the blogging industry, when I have ideas for collaborations and make pitches to organisations (which, admittedly, doesn’t happen too often now – organisations tend to come to me with their ideas), I’ve always got a thought in my head as to how I, I’m NOT Disordered, and my blog’s readers will benefit from it. And to be honest, I think that’s a completely right and just thought process. I mean, why would anyone put the amount of time and energy I feel that I put into my content if they weren’t going to benefit from it in any way?

So, personally, I look for Projects that will primarily benefit my mental health – in so far as my mood, a sense of achievement, feeling productive, the Project being rewarding… My second priority in benefiting from something I do or take on, is then all about I’m NOT Disordered’s readers. I think this is the case because blogging has become so important to me and I really recognise that myself and my blog, wouldn’t be where we are without its readers. Years ago, when I would pitch collaboration ideas, I didn’t mention my blog’s statistics and would almost always get a negative response to my idea. So, I began researching what a pitch should look like and include, and I found out you really should mention the statics and overall readership/views of your blog. And in adding that to my pitches, I almost instantly began receiving positive responses with so many organisations wanting to get on-board and I think it was this, which mostly led to the change in me now being approached first.

Benefiting with my blog isn’t the only important area of this topic though, I also find this true with my mental health – I always need to feel that I’ll benefit from doing something that a professional has recommended. And I think this is mainly true when it’s regarding therapy and opening up more both about the trauma I’ve been through and the symptoms of psychosis I now experience. I think that my past experience of confiding in mental health staff and then feeling like they’ve used what I’ve said to make decisions I disagree with e.g. having me sectioned or putting me under the care of the Crisis Team or increasing my medication. So, I think it’s understandable that those experiences have obviously led to me being reluctant to share my experiences, thoughts, and feelings.

So, with my thoughts on benefiting from various things in mind, this was my answer to the Patient Experience Team’s question…

1. Communications and Marketing industry career experience.

2. An increased following on my blog!

3. A sense of purpose and the feeling that I’m doing something good with my time.

4. Reassurance that NUTH are passionate about helping those with mental health problems.

5. Inspiration from the kindness and dedication of the NUTH staff I worked most with (Gemma).

6. A confidence boost in the feedback I received for my input in the meetings and blog posts.

7. A rewarding sense of mutual respect and appreciation from NUTH.

8. An improvement in my creativity in so far as creating online content.

9. A massive sense of achievement because I’ve always wanted to work with NUTH on my blog.

10. A wider support circle in feeling that I can add the NUTH staff I worked with.

The third and final question we were asked was in checking if we have any feedback around engagement for the Trust’s staff who had been involved in our work with NUTH…

So, my thoughts on feedback are something which I’ve said numerous times to people, but which I may not have said on I’m NOT Disordered and in my content… Basically, I feel that it’s all too easy and almost automatic to speak up and register a complaint about something, but then it’s somehow incredibly difficult and less motivating to give praise and positive feedback about a service or one person in particular.

A very recent example of this would be in two particular experiences with my local Ambulance Service. The first was after I had jumped from a small bridge that passed over a disused railway track near my home. I had landed on my side and my tummy was so sore, so I managed to get myself out of the ditch and called an ambulance. They ended up coming to the wrong side of the bridge though and so the female paramedic left to drive the ambulance around to nearer where I was, and whilst she was gone the male paramedic said “are you sure you’ve jumped? You didn’t just get to the bridge, chicken out, sat on the ground, and called us and say you’d jumped?” Now, sadly, a comment like this isn’t exactly surprising or rare in mental health scenarios, but that didn’t make it any less upsetting and offensive.

In logging the complaint, I explained that I recognise they might very well get people who would lie in that way, but that it was insulting to ask me. I also said that even if they asked someone that who had lied, why would anyone turn around and be like “you caught me, I didn’t really do it?” And so, what good could ever come from asking a person something like that? In the end, his attitude had me completely refusing to get in the ambulance and go to hospital – despite the amount of pain I was in and all the bruising (which the paramedic saw) that had already come up down my left side – and so I came home and cried myself to sleep.

The following day, I went to my local newsagents to get some paracetamol because I was still in so much pain and I ended up passing out in the shop. And ambulance was called and when the female paramedic did an ECG, she felt my tummy and said not only was the bruising worse, but she could also feel a ‘hard mass’ over my ribs and spleen. I was terrified and obviously I went to A&E with them, and the whole way in, the paramedic was so lovely and trying to calm me down and distract me by talking about other things.

So, once my spleen had recovered and I felt calmer – and with my belief that it’s only fair that people and organisations are provided with recognition when they do well as equally as if they do something wrong – I completed two forms on the Ambulance Service’s website. I filled out a ‘compliment’ form for the female Paramedic and a ‘complaint’ regarding the male paramedic who’d questioned my account. Ironically, I heard back about the complaint long before an email stating that the compliment had been received! Also ironically, my motivation for reported these two instances was the same – even though they were so totally different! I think that either way – whether it’s good or whether it’s bad – it can be a learning opportunity. If it’s pointed out that you’ve done something well then it can be both encouragements to continue that way and to support other colleagues to also behave in a similar way. If you’re called out on a bad attitude or wrong actions, it should be seen as a good occasion to learn not to do these things again and also to speak up if other colleagues exhibit similar attitudes and behaviours.