Sharing my concerns in order to fight.

Warning - the following is horrific. 

I’ve been trying to write this blog post for days, weeks, months now. 

A long time. 

During this long time –  that feels like no time at all -

I have felt more pain than ever before. I have felt unsure about what to do and what relevance anything has now. 
I have avoided social situations, because 'I don't know what I am doing right now or in the coming year and no, I'm not alright.' 
I have felt more guilt, more shame, more rage, more loss than I knew possible. I have failed to process who this new person is and felt alien in my body. I have cancelled nearly everything, pulled back, ran into the mountains, hidden, kept away, kept busy, ground to a halt and watched everything and everyone continue around me.

Time makes little sense now.

My therapist says I am experiencing an ongoing dissociative episode - due to PTSD. 

I tried to write this blog again after my residency at forest fringe – one of the things I didn’t cancel - I had set it as a goal to be ok by then, to be around people again, to be more myself.
I didn't succeed in all of those goals, I was not ok and I didn't write that blog post -- Thank you all those of forest fringe - it was good to be around you - thank you for being so supportive - sorry these thanks are late. 

I was advised by my lawyer to not say anything publicly until I had as much information as possible and still then to tread carefully, to not place blame or say anything defamatory publicly.

I am only allowed to express my concerns.

At the end of March 2015 my sister died in a mental health hospital from aspiration pneumonia.

This is classed as a natural cause death.

She was 30 years old.

I am concerned that my ongoing concerns for her health and safety were ignored. 

I am concerned that her life was not valued. 

I am concerned her death was avoidable.

I am concerned that after years of asking for regular information into my sister’s care and treatment - or just any information at all - I have now seen all of her medical records and the more I know, the more I am aware of how little I knew and how much was withheld from me.

I am concerned that it is impossible to find out how many other young vulnerable people are dying in mental health facilities, because this information is not researched correctly or is hidden from public view.

I am concerned that my previous concerns about budget cuts to important mental health services would lead to poorer quality care and more deaths has been personally verified. 

I am concerned that all my concerns came true. 

I am writing this because it’s still not real and although I can say it out loud and type it on my computer my brain will not process that any of this has actually happened.

I can’t get my head to understand that I’m never going to speak to, or laugh with, the person who I have known the longest and loved the most.

This is probably because I don’t want it to be real, but in order to sustain myself in the huge fight for justice that I have in front of me - I need my brain to start processing that it is real and i’m hoping that sharing this is the start of that.

I need to be well to fight - so I am sharing my concerns. 

There will be more - this is just the beginning. 

I will need help and I will be asking for it. 

Note - if you know me this is news is new to you - I'm sorry I haven't said anything - I haven't known how. And if at any point recently Ive ignored you, not said hello, not replied to emails - im sorry aswell. 

All of this is fucking hard - so if you want to speak to me and don't know what to say, don't worry I don't know what to say either, but it's good to be seen and heard.

(All those of you who have sent messages - thank you)

Talking to stop from falling.

The following is heavy (and I swear a lot – apologies for any offence in advance - It was also written a week or so ago – but only now I am calm enough to share.)

Let me be clear that in writing this I in no way want you to carry this weight. I don’t want you to fix my shit. My intention is not to put my shit upon you by sharing it. (I try not to feel or see it as a weight – but that's another blog post.)

I feel people don’t talk about their own mental health to each other because of these ideas; of being put upon, weight baring and shit fixing. Compassion is not about that, it’s about listening and empathising – that’s all.

A few weeks ago - all over the country - people where encouraged to take five minutes to talk about mental health in order to end stigma as part of Rethink’s Time to talk campaign.

On that day, like most days, I spent more that five minutes talking about mental health – my own and the mental health of the family member that I love and care for, who is in hospital under section. They had their CPA – Care Plan Assessment – meeting, which happens every 12 weeks. We are supposed to go through their plan and assess whether we are ‘moving forward’ – it's the biggest game of pass the fucking buck bureaucracy I have ever come across and it is notoriously difficult. I am always in the shit position with no power, asking how we are measuring ‘recovery’, what the milestones are and fighting to keep us, the family, informed of what’s happening with care, meds, behaviour – you know - what the fuck is actually going on. There are countless events that have taken place, when I’ve been the last to know, including an allergy to meds and hospitalisation for triple pneumonia!

My family member is under section because society deems their way of seeing themselves, and world, as dangerous and unsound and legally they are seen to not have the judgement to make safe decisions for themselves. However, even though they are ‘protected from themselves' by their section and people have been appointed to manage their care, they can decide whether I am allowed to know what is going on with their treatment. This can happen on their request. My family member has to agree to this on a rolling basis – meaning they have to constantly remember to say they want me know anything – I don’t believe the doctors constantly ask. My family member can be non communicative. I always feel the hospital use this to their advantage.

During the CPA, it came to light that their had been yet another incident that I was not informed about. The doctor brought up in the meeting that the ‘prosecution had taken place.’

What prosecution? - I say

Did the social worker not inform you?

Inform me of what? - I had no idea what he was talking about.

In August 2013 – over two years ago - my family member was attacked by a member of staff in the hospital  – whilst being restrained on the floor the member of staff stamped on their head, bruising their face and neck – the female nurse was reported by another member staff and has now been prosecuted and sentenced.

I can’t begin to explain how this feels. Let me start by saying that this hospital is miles better than any hospital my family member has been in before. Which should begin to paint a picture of low secure units in the UK.

My family member is ill due to trauma – lots of trauma and I want to protect them from anymore, but it seems I can’t. 

They are a huge number of carers who also manage their own mental health. Me included, but my needs seem so much less than my family member that I often ignore them until it’s got so bad I’m not functioning at all.

The day after the CPA was a hard day; I am always trying to keep my head above water, not let myself fall. I guess that's why I’m writing this, to stop myself from falling. I worry that my friends feel put upon by me, feel like it’s too much weight, that I want them to fix it. It seems I am also afraid of stigma, even though I don’t think I am.

When I’m in a bad place. I loose my voice too. I speak to understand my emotions, to make sense of things. When I don’t speak, when I loose my voice, everything stops making sense.In the past I would have kept this to myself, but I fear that might make me as bad as the hospital – hiding information as a form of self-preservation.

There are wider implications of this incident – about human rights, freedoms and choice and sharing of information. Who has a voice and when is that voice listened to? If a voice is disregarded as ‘mad’ how do we ensure that the voices appointed to speak for them can be trusted? Can anyone ever really speak for someone else’s wants and needs – even me as a family member?

I am lucky to be able to exercise my voice and I’m hoping by doing so it will stop it from disappearing and me from falling.

Time to talk.