First day needing no contact with the Crisis Team in seventeen days. Let me hear you say Hell Yeah!
I wanna get down, man, like Go man go!
He's insisting but I'm Still not listening.
You're scratching around just trying to fit in, well move on people.
There ain't nothing to see.
The Jim Jones Revue. It’s gotta be about me.
Took a lot of time to get going Saturday morning, doubtless down to the effects of my new medication regime.
Mirtazapine, has increased to 30mg from 15mg earlier this week, combined with the regular 10mg of Diazepam a day, whilst reducing my Fluoxetine from 40mg to 20mg. I’m happy with the plan for my medication, as is my wife and my Consultant Psychiatrist and the Crisis Team. Long term we’re working toward removing the Fluoxetine completely, slowly reducing the diazepam, and optimising the dose of Mirtazapine, which touch wood, is having the impact we all hoped it might. It’s my fourth anti depressant in eight months. Medication in psychiatry isn’t scientific, it’s mostly trial and error.
So coffee and buttery crumpets in bed, whilst my wife was downstairs taking part in an online Zumba class. She loves Zumba and it helps her maintain her own mental well being and helps to de stress her from caring from me 24 hours a day whilst working in a highly stressful job too.
TEWV finally respond
Had a bubble bath, shorts on, sun shining and so went and sat in the back garden for some fresh air and to prepare for a call at 1:30pm on google meets. This wasn’t with the TEWV Mental Health Crisis Team, but with James Creer, a TEWV Public Governor, who had kindly reached out on Twitter and offered to chat with me, having read of my growing frustrations at TEWV’s poor approach to communication, their CEO taking a break from Twitter despite asking users of his service to contact him and, last but by no means least, my concerns I have repeatedly shared that the Mental Health Crisis Service run by TEWV in my area is not fit for purpose and is currently unsafe.
I made some notes to remind myself what I wanted to discuss with James during the video call. A side effect of my current meds is I sometimes struggle to concentrate and very occasionally l will have word finding problems mid sentence.
1:30pm arrived and, sat alongside my wife, we were greeted by a smiling, welcoming face. After two weeks of frustration of TEWV comms and management either totally blanking me or sending bland, corporate nonsense, it was a relief to see a face representing the organisation.
As a public governor, James does not receive a salary for the role. Here he was on a sunny Saturday afternoon, offering his own time, as long as we needed, to chat, listen and discuss my journey to date, our concerns at the mistakes made, the massive gaps in the service and the lack of safety of the mental health crisis service in my area as it currently stands.
One Big Conversation - have an alternative plan in place
We also discussed in depth the frustrations of TEWV’s digital presence, it’s methods of communication, it’s lack of public engagement and the massive frustrations around the decision of the Trust’s CEO, Brent Kilmurray, to make a statement earlier in the week that he would not be engaging with people on Twitter, despite having invited people to contact him directly during an initiative launched by him called #OneBigConversation
If a CEO is going to invite people to speak on Twitter with him, it’s probably good to have a plan in place to have someone in reserve to takeover if the CEO is unable to continue that conversation. I hope Brent’s reasons for coming off Twitter are not down to any ill health or personal reasons, I wish him well if this is the reason and sincerely hope he returns to the platform soon.
The Trust need to understand that a wall of silence can have a significant detrimental impact on their service users and carers. Well certainly it had in my case, I’m not speaking on behalf of anyone but me and my carer.
Positivity Reigns
It was an incredibly positive conversation with James. What was immediately clear was we shared many similar values and aims, for TEWV to work to become a great mental health service, that has safe services and is seen as an exemplar in how it interacts and collaborates, communicates and operates, with its users, public, staff and board.
I’d had no responses from any senior managers of TEWV to my blogs and vlogs, despite receiving so many wonderful messages from colleagues working in the sector, locally, regionally, nationally and internationally, confirming my words and expectations were fair, measured and reasonable. It was only after a public governor contacted me, very publicly on Twitter with all the senior managers tagged, that another manager messaged, but in a very corporate manner. All this whilst I was experiencing a mental health crisis.
The irony was my blogging, which was seemingly causing problems for TEWV as I wasn’t praising their services, had come about as a suggestion by their Crisis Team, that writing down my thoughts could be helpful in working through my depression and constant suicidal ideation.
All I’d really wanted was an acknowledgement, a simple “sorry you’re not well, hope we can help you” type message. TEWV’s current approach to comms doesn’t seem to allow for that approach, it would appear to be old school shut down, say nothing and drive people to PALS and complaints.
If you publish your values, make sure you remember them
TEWV’s digital accounts are the shop window for their service. It’s a mental health trust, but its current use of Twitter for example, doesn’t engage with users, but tweets include announcements such as looking forward to launching its staff flu vaccine campaign. It’s muddled and confusing what the account is for. TEWV’s social media house rules are a long read. A prize for anyone who can spot where it explains the purpose of its accounts and any mention of mental health..... a good place for TEWV’s comms team and senior managers to start might be refreshing their commitment to their own values https://www.tewv.nhs.uk/about-us/how-we-do-it/our-values-and-behaviours/
James, Public Governor for TEWV, gave up almost two hours of his time on a Saturday for this. My wife and I would like to record our formal thanks to him for not only giving up his time, but for his openness, honesty and active listening. He has promised to raise points made at the forthcoming board meeting this week and to also raise my offer and willingness to work with TEWV to help make their Mental Health Crisis Service’s safe and their communication more appropriate to that of a mental health trust. I’m not the only one who feels they are well below par, CQC’s last inspection echoes that.
An open offer to work with TEWV
I’ll be writing this afternoon to Miriam Harte, the Chair of TEWV, not to submit a complaint, but to ask the board to record our thanks to James for his time and input. I’ll repeat my offer to work withTEWV, however I can, in a positive, purposeful and timely way. I’ve previously mentioned how lucky I’ve been in my own career to work with some of the best influencers in the world of mental health and have hopefully picked up some learning from them on how change can be driven and delivered in meaningful ways, avoiding empty tick box one way ‘conversations’. The offer is there and I’ll do my very best to influence, whilst protecting my own health, but using my current experience whilst it is so fresh and relevant.
Not fit for Purpose
The Mental Health Crisis Service in my area is not fit for purpose. Had my wife not been a skilled advanced mental health nurse practitioner I would not be alive or at best would likely be in intensive care. TEWV would have another Serious Untoward Incident to investigate or an inquest to attend. That is very clear.
Time to relax
Talking about my illness is exhausting. My new meds regime has definitely had a positive impact on my mental state, my mind is more relaxed, I’m not constantly considering ways to die and for 48 hours haven’t wanted to die. I’ve still felt worthless, lethargic and not wanted to do anything I’d usually love and enjoy. But I’ve the peace I’d craved since early August and I currently feel the best I’ve felt since early January.
We took a few deep breaths and sat for a while in the garden.
Positive Risk Taking Improves Well Being
I then pruned one of our apple trees, after picking all the fruit off it. Here I was, up a ladder, with clippers, saws and shears. The risk ratings would be off the scale were I being observed by a mental health crisis practitioner who did not know my background.
I was once a landscape gardener, hence my nickname of Blot (on the Landscape, a book by Tom Sharpe). My wife supervised me, but I spent a good hour lopping branches and was really pleased with the outcome. It had given me purpose and a lot of satisfaction. This was just a week after the Crisis Team had been moving ever closer to sectioning me because of an error of communication and that I’d had no medical assessment for seven days of care by the service and when I did an error by an on call GP had resulted in the halving of my diazepam. That in itself would be grounds for a major complaint.
I could so easily have been in hospital on large doses of sedatives and been sectioned if we hadn’t stood our ground. Instead I was in the fresh air using some of my skills and knowledge.
I cleared away the branches and felt, as Phil Daniels would say in Blur’s Parklife, an enormous sense of wellbeing.
Disclosing Illness to a close relative
I’d not disclosed any details of my illness to my Mum, who lives nearby. An opportunity presented itself to sit down with her and my wife to talk through some of the details of my journey since January 2020 and in fact far earlier than then. The right opportunity at the right time presented itself to have a relaxed, open conversation about the past nine months. There was no need to go into great detail of what had gone on, but enough so there was understanding where I had been mentally, where I was now and what my hopes for the next few weeks are, all with a warning that my mood could crash at anytime, there’s no guarantees my recovery will be smooth, but I’ve got hope now, something I couldn’t have imagined seven days ago.
It felt another big step.
For the first day in seventeen days of being under the care of the Mental Health Crisis Team, we didn’t have any contact with them. Now that is progress.
As the mighty Jim Jones Revue would shout......Let me hear you say Hell Yeah!
Keep on keeping on
Love
Blot x
I
.
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