• Tom Robinson

Dealing with the frustration of being ignored by the system: trying to come to terms with the past!

Yesterday I went into Oxford, firstly to meet a friend for a catch up and then to have a bone densitometry scan at the Nuffield Hospital.


I met my friend at the Warneford Hospital which is where the majority of the trauma in my 20 year psychiatric nightmare has gone down.


But even though it’s been the scene of so much distress, failure, and upset (why am I holding back? CATASTROPHE even), I also have a really strange affection for the place which I can’t quite explain.


I felt sad when I was wandering around the old place because it’s literally tumbling down and represents and mirrors the complete lack of funding and care on the current system.


It was opened nearly two hundred years ago and hasn’t been touched in all that time. I realise it’s a listed building, but it could have had a bit of a face lift, some of the walls patched up, the graffiti on the lodge house removed and a general tidy up surely?!


There’s a rotting old ward in the garden which is the old ‘Highfield’ and it’s just a disgusting eyesore that’s neglected and uncared for – just like the patients on the wards – It just made me so sad.


The founder, philanthropist Samuel Wilson Warneford, will be spinning in his grave right now because the beautiful construct that he created is being trashed and neglected – we have got to do something about it!


Being at the Warneford isn’t easy because it always stirs up so many unwanted memories which is obviously not just my own experience because when my friend came out of her appointment the first thing she said to me was:


“Let’s get the hell out of here!”

So, we went to the Nuffield and had a catch up there instead!




Discussing the horror of the past


I cannot over emphasise the importance of the ‘depression/bipolar/mental illness troop’ when it comes to coping with all of the trauma involved in a psychiatric ‘safari’.


Having people that understand the brutality of the illness and have experience of the shocking system is of paramount importance because it makes you feel less alone and that your feelings are justified.


I was talking to my friend yesterday about the whole ketamine fiasco/nightmare/catastrophe and we were discussing that tricky word ‘forgiveness’. She was trying to appease my residual anguish by asking me why it is that I’m still so upset by the whole thing.


I want to clear this up – mostly for my own sanity but also so that others understand my thinly veiled anger!


Of course I’m annoyed that the treatment backfired and I wasn’t given a mood stabiliser before being administered ketamine but it’s the complete lack of care, empathy or support after the whole fiasco that's really upset me.


I am angry about the fact that I have been shown no care or consideration by the profession even though they nearly killed me with the treatment.


I’m so done with skirting around this whole saga now, and I’m making a stand, not only for myself but for future patients who must know the risks involved and must also be FAR BETTER cared for!


Can’t they just contact me and say “We’re so sorry that this happened to you and because of that we’ve done ‘XYZ’ to change our treatment protocol and we’re going to put an ‘emergency contact’ system in place”…. Why can’t they just do this?


I kind of know why, and it’s because they don’t want to admit any liability, but for God’s sake that pisses me off so much quite frankly!


I would be prepared to forgive the whole thing if they promised to make changes and take precautions in the future, but as it is I’m having to write complaints which are being dismissed and discredited which just makes me even more FURIOUS!




The empathetic radiologist


When I had my bone density scan at the Nuffield, I was so delighted to find that the radiologist was fascinated when I explained the whole high dose levothyroxine and rTMS remission from severe bipolar disorder story.


I’m having precautionary scans, and ECG’s because my private doctor is so unbelievably thorough in his approach to this treatment - unfortunately, the NHS psychiatrists are being ridiculous about the whole thing and are refusing to issue me even my repeat prescriptions (see letter in ‘Why are the NHS refusing to help me’ post).


Some of the friends who are also on high dose levothyroxine are managing to get their prescriptions on the NHS yet I’m not. An NHS doctor issued me a prescription of it and then changed his mind recently, sent me the unhelpful letter, and basically dismissed me.


They would know all about it if they bothered to read the letters that we’ve been sending them weekly for the last two years but of course they don’t. That’s why they are annoying me when they suggest I see an endocrinologist and cardiologist etc – I’ve done all of that already – read the letters before you write these stupid things!




The utter disappointment


After the radiologist had been so interested to hear my story, I was left pondering the whole thing on the drive home. The question on my mind being:


“Why haven’t ANY of my previous psychiatrists asked me about how the hell I’ve made it into full remission?!”

Having been going to the Warneford as well as my GP and community psychiatrists for years, often in tears and desperation with this f’ing BRUTAL illness, YET now being fully well you’d think that they would be fascinated and keen to know how this miraculous transformation has happened?!


Instead, they contest my treatment and don’t respond to the polite emails I’ve written when I’ve tried to inform them of my successful remission story. I’m so done with them, I really, really am.


If they ever want to hear about this in the future (unlikely, I’m sure!) of course I will give them my time so that they can help their patients in the future. People are dying every day from this horrific disorder yet here I am fully better yet no one from the profession is recognising this! – please God, for the sake of other sufferers - help me to get through to these doctors!


Dumping all of that down on the page has really helped me to align my thinking this morning and to appease my anguish somewhat.


I really think everyone who has a mental health issue/illness should blog or journal about it because I find that it helps me so much!


Sorry for the rant today but I really needed to get that out!


Thanks for reading,


Speak to you soon,

TR

www.dyingtostayalive.com




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