I have received care for my mental health from three different NHS trusts and I have had a mixture of experiences. I think there is definitely a post code lottery, up until my relocation to South Wales the majority of my experiences had been negative. I am now lucky enough to live somewhere where I have had some very good experiences with my mental health team. I would say that some of the things I have experienced with my mental health teams have damaged me and had a negative impact on my life and treatment. I think it is important that we speak about these things because I don’t think that mental health teams are aware of how damaging the wrong care, or lack of care can be.
I find it is often the things that are said that have the biggest impact on me. The following are examples of things that have been said to me over the years:
“Can you please leave, this room belongs to home treatment and they need to use it.” This was said to me when I was actively suicidal and desperately trying to seek help. I was crying a lot at the time, obviously in distress. I left the room and went into the toilets because I didn’t want to go out in public in the state I was in. I was trying to calm myself down and stop crying when someone came into the toilets and said, “We need both of the cubicles so can you leave please!” I felt like a waste of space and a waste of time when I was already suicidal. It made me lose trust for my team and made me feel as though I couldn’t contact them in a crisis. It also lead to the police detaining me under Section 136 because the crisis I was in escalated.
A patient was kicking off on the ward, at the time I was detained under Section 2 of the Mental Health Act and on level 3 observations (with a member of staff at all times) and the member of staff who was sat with me said, “And you want to be here!” It makes me so angry when I think back to that, she thought I wanted to be on the ward, but I was sectioned! I didn’t want to be on the ward at all. It felt like a bit of a dig, maybe that’s the way I interpreted it but it made me feel as though they perhaps discuss me and that came up in conversation. Along with other things that were said and done during the admission, it lead to me faking that I was fine and safe and I was discharged a couple of days later when I was actually in a very unwell place.
“Anorexia is not an illness, you are not mentally ill.” This was said to me a few years back after a hospital admission and losing my place at college due to them saying I was too ill to attend. I saw my psychiatrist and he said this to me. I felt like such a fraud, totally isolated. I didn’t have a mental health team I could speak to, I’d lost my education, I had no family support. Who could I speak to? No one. I used to leave that particular CMHT in tears every time I went there because they would say things that were so unhelpful and I feel that this was because they lacked understanding in both young people and eating disorders.
“I can’t stop thinking about dying. I need to die.” This was said to me by my care coordinator, she mimicked my voice, repeated what I had said and then laughed in my face. That was the day before I was taken to a cell by the police due to a lack of hospital beds and I often think that maybe it could’ve been prevented if she didn’t take the mick out of me and she would’ve taken me seriously.
“I am listening to you but I am disagreeing.” This has been said to me several times by two different people lately. Usually they have an opinion on my life or my mental health that is incorrect and when I try to correct them they will interrupt me and when I ask them to listen they will use the line above. It has been used when I was talking about the most distressing parts of my mental health and then I was told that this wasn’t the problem, which is really unhelpful because I’m almost certain I am the only one with my mind. This sentence was also used when I explained I had got lost, and was told I hadn’t. Bare in mind I’ve only moved to this area recently. This sentence makes me feel very unheard because it doesn’t matter what I say or how many times I say it, they will not take what I am saying as serious or true.
There are many more examples that I could include in this, things that have been said that have stuck in my mind and played on my mind. They may just seem like words but they have formed sentences that have meant I haven’t reached out to services when I have been in need of help, or have lead to me sitting in an appointment in silence afraid to speak in case they make it worse. I’ve been given no choice but to suffer in silence by the services that were meant to be there to help me. I have asked for help and ended up feeling isolated, hopeless and ashamed.
It isn’t just words that can cause damage, it is action too. For example, the time I asked about the medication the nurse was giving me and was restrained by four people and injected. Overall, I think the problem lies with listening to, hearing and understanding patients and this creates a wall. It’s very hard to reach out and seek help in a crisis without patients having negative experiences and memories of the service that they are contacting. I find that it has made everything more difficult and distressing, whether that be going into hospital, accessing crisis care or just weekly appointments with my psychologist. Mental health services are meant to provide care and support to get people well again, they are not meant to be causing the damage and becoming part of the problem.