Category: Mental Health Services

I want to make changes in this blog

I want to make changes in this blog

I want to make some changes to how I write this blog.

A lot of everyday life feels @&)!%*€ awful at the moment. My husband has cancer and is having major stomach surgery next month. He has 3 other operations due and that’s assuming there aren’t complications of the March surgery. It has been horrendous since November trying to sort out our state Benefits and just when it seemed it was sorted, I was told I had to have a reassessment of my disabilities for one of my Benefits and had to complete a 25 page form and send around another 20 pages of evidence in with it. I have a face to face assessment 9 days before my husband’s surgery. This brings with it the worry my Benefits will be stopped or reduced if they decide against me. My disabilities are all worse than when I was last assessed but you hear nothing but horror stories about Benefits assessments. Our money could get cut off whilst my husband is in ICU after the operation. We have other financial worries as well. We have had a whole series of let downs from people that should be helping us, including doctors and nurses and support workers. We’ve been brushed aside and labelled as worriers or nutcases because we have mental health problems – when in actuality my husband has multiple tumours in his body. When I have severely painful disc damage and degeneration in my spine. We have complex and deteriorating family relationships to work through and little support.

I could go on.

I want to scream. I don’t know if I’m crumbling or exploding but I feel I’m on the brink of going to pieces. I don’t know when I last slept through the night. The nasty angry dangerous version of me is getting out more and more as dissociation takes over. Right when I need to help my husband.

I need to make this blog different. I have become more and more sporadic in posting. When I’ve posted at all it has been sad and angry, as the result of an overflow of emotion or a need for an outlet of some kind. Having that “let out” is important but I don’t want it to be all this blog is. When I started writing I wanted to be able to express myself and also to be honest about what living through mental and physical health conditions is like. A lot of that is difficult, but there are good times and strengths too, and I want to reflect that. I want to reflect learning and gratitude too. I want to try to explore different aspects of my conditions and what helps. I want to post regularly, with more structure.

I need to make plans for how to change.

Ginny xxx

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Losing Lily

TRIGGER WARNING for discussion of suicide, of deaths of people suffering mental health conditions, and of failings in mental health care. If you are in mental distress, caution is advised in reading this post.

A NOTE: This post mentions anonymously the death of a person who had recently left the care of a service I worked in. There was an investigation into the circumstances of the person’s death and the investigation has now concluded. I want to make clear that this post discusses solely my experience from my point of view and my knowledge of the situation, my thoughts and feelings. It does not reflect the position of the service I worked in, or of any other person or team involved in the person’s care.

During the time I worked in a specialist community and inpatient mental health service 7 or 8 years ago, two of our patients died. One lady had moved away to a different part of the country so hadn’t been in our service for a couple of years when she tragically died from an overdose. The other lady had just left our inpatient ward (as far as I know against doctors’ advice but assessed as having capacity to make her own decision in this regard) and gone to live independently, but deteriorated rapidly within weeks and died 4 months later. I’ll call her Lily*.

At any one time we were working with several other patients in my eyes dangerously close to death – because of their drive to harm themselves (by overdose and substance use and so on), because of their suicidal intentions, and/or because their organs were so damaged physically by the effects of their mental health conditions (starvation and other eating disorder or self-neglect symptoms leading to heart failure or diabetic coma, for example).

We were working constantly short staffed, physically and mentally unwell ourselves because of the workload and emotions and conflicts and fear of making mistakes, within constraints of time and policy that often felt out of our hands, trying to provide a service fair and the best for everyone, but knowing we could not give enough.

Lily has never left me. She’s come to my mind every week or so since the winter she died. I was a secretary, not a clinician. I didn’t know Lily as much as I got to know some of our other patients. She was intelligent and wanted to do well and was very driven for her goals. She made close friendships with a couple of people on the ward. Yet, she really needed love which I think she often didn’t find where she may have most expected it. She really did start to get better but something very painful remained impossible to reach. Sometimes I wonder if she was hurting so much she’d had enough. If everything was so locked in and disconnected from the people she needed and wanted to trust, that in her pain it felt like time to go – if she didn’t choose exactly when but she did know she’d quietly slip away.

We didn’t reach her. Even as she got a little better, we couldn’t reach through her pain. We didn’t catch her. We didn’t keep her safe when she was slipping. We lost her.

There was an investigation – many investigations – after Lily’s death. The final investigation ruled that the harm she suffered, and her death, were avoidable. I just now read the start of the report of the last investigation and horror and panic and confusion took over. The room swayed and spun and I couldn’t breathe. I’m still freezing cold.

Her life is on my hands. Not mine alone, and not the service I worked in alone because several other services were involved – but I was there.

Of course we had not wished to reject her or abandon her or disown her or her care. One of the worst things is that a lot of what was judged harmful in the report, were either actions in line with procedures we were taught to follow to give safe and fair and consistent care to every patient in the service, or matters that within the constraints we faced, we could not personally control. But whichever, it wasn’t right or safe for Lily. Consistency and guidelines and constraints are one thing but every individual patient is in very individual circumstances at very individual risk. Procedure under huge constraints imposed from outside, doesn’t make account of that.

What do we do when the steps that were supposed to have been good or safest or standard, or following established guidelines, or the best we could give, or taken in faith in the decisions of those we work for and trust, were actually steps that led to a death?

Personally, what should I have done and what do I do now? My heart is screaming at me, you did not speak up, you did not speak when you had concerns at what you heard, you did not act, you did not follow your gut – you followed instructions instead, and you know this wasn’t the only time.

Good intentions or having tried to follow what was supposed to be good enough, or even best, count for nothing now.

I’m reminded of my mother and her care and deterioration; how we were locked in an agonising cycle of her discharge, the same crises repeating, her deterioration and readmission, worse and worse every time, all of us knowing what would happen but all held powerless by legislation that didn’t allow us to put in place a few simple steps that would have kept her safe. Ultimately an adult judged to have capacity to make a decision is allowed to make a decision that will harm herself, allowed to cut herself off from sources of help, allowed to deceive everyone who wants to help. Even when those decisions and actions are the work of a delusion founded in deep-rooted, severe psychosis. My mother couldn’t be more different from Lily but I see similarities in how the hands of those who wanted to help were rendered powerless.

In my head when Lily stares at me, slowly fading, I don’t know what to say, and everything I should have said back then echoes around me.

(*not her real name. Again please note that the opinions and thoughts and experiences mentioned in this article are mine alone.)

Ginny xxx