Time To Talk Day

Today is Time To Talk day 2017 so take 5 minutes to talk about mental health. It is so important that we get these conversations going because they can save lives as well as working to stamp out stigma.

This Time To Talk day, I’m going to tell you a little bit about how I’m spending it. I’m currently in a general hospital being tube fed for my anorexia, I’m on 2:1 observations meaning I have two members of staff with me at all times and I’m on a level 4 which means I must be within arms length of the staff members, this includes when using the toilet. So there the facts about my situation but now it’s time to talk about how I feel.

I’m confused, recovery and weight restoration is being forced on me and I’m not sure that I want it. I’m scared about the future, my team are looking for a unit to send me to and so far none have accepted me. I don’t know what the near future holds for me. I’m homesick, I haven’t been home in 18 months and I would give anything to sit on the sofa with my family and dog and watch some rubbish telly. I feel alone and lost, I haven’t seen many people in the last 18 months and my grandmother has passed away during that time, I never got to say goodbye, I wasn’t well enough to go to her funeral and that breaks my heart everyday. I’m annoyed and angry at myself for losing out on so much. My goddaughter will be 3 in March and I’ve missed so much of her growing up, my dog is 14 and I’m scared she will die before I get home.

I have conversations about mental health every single day because I am unwell, but you don’t have to be ill to talk about mental health. We all have mental health, so please this Time To Talk Day 2017, take 5 minutes to ask someone how they are, send a text, natter over a cuppa, get the conversation going about mental health.

Happy Time To Talk Day everyone!

“Call The Police”

During times of crisis I have been told many times to call the police but I often wonder the appropriateness of this. I have phoned my crisis team during a crisis and been told that I should call the police and this completely and utterly baffles me. In a mental health crisis whilst on the phone to the mental health crisis team why is it appropriate to call the police who have very little training in mental health?

The police cannot provide me with my PRN medication or administer it. Mental health problems are medical and most require medication. If they were to assess me at my psychiatric hospital then I would have access to a nurse who could administer medication should I need it. How are the police going to handle someone in need of medication in an appropriate and non-distressing way?

The police, whilst they have been kind and caring towards me, they simply do not having the training in mental health to help people who are desperately unwell. When my illness had beat me down to the ground, when I was exhausted from anorexia and crushed by depression I did not want to be explaining what anorexia is like or hearing, “So do you just not like food?” I needed someone trained in mental health to be caring for me and the option to have a conversation if I needed to talk.

Funding cuts aren’t just being made within the health care system, they are also being made within the police force. The police are needed to keep our streets safe, to fight crime and to arrest those individuals that aren’t complying with the laws of society. When I was unwell I had two officers with me for an entire Friday night…this was the Friday before Christmas. The police force needed those officers on the streets but because my mental health team didn’t step up and take responsibility, two police officers spent their entire shift sat with me in a hospital waiting room.

It’s absurd that people struggling with mental illness are told by mental health services to phone the police….it’s like calling for an ambulance because someone is having a heart attack and being told to phone the police instead.

These are peoples’ lives, a mental health crisis is often life threatening and getting the care wrong can have fatal consequences. The police’s resources are also limited, they need to be doing the job that they are trained to do. So why do mental health teams feel that it is appropriate to direct patients to call the police during times of crisis?

The Damage of Mental Health Care

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.

My Recent Admission

I don’t normally blog about myself with updates of my current situation but this feels important. It feels important to say it all now although I am very tired so please bear with.

For weeks I had been explaining my situation to my mental health team, they were aware I had stopped taking my medication due to the sickness and knew that the thoughts of suicide were getting worse and worst whilst my body felt totally drained of energy They knew all of this but did not step in or offer solutions when I was feeling so very stuck.

On Thursday night things hit a bad point. I had been up the hospital for an emergency assessment that day in which the outcome was no different to the ‘care’ plan all along. I phoned up the man who said he was my point of contact on the way to go to harm myself and he suggested listening to music, I was way past that point then and explained this to which I was told that it was my choice and I could just walk home. Anyone who has been in that serious actively suicidal frame of mind must understand how it takes a lot more (often someone else) to help you out of that crisis. I was expected just to turn around, go home and sit there like nothing happened.

I couldn’t.

I managed to convince the member of staff to give me some medication to help me, he then drove me home agreeing to see me in the morning.

After a horrendous night, a night which my mental health team didn’t give me the opportunity to talk about, I walked into the meeting with a piece of paper in my hand. I was hoping to talk, I needed to talk but instead I was just given a prescription and expected to leave. Still at crisis point I burst into tears and sat there with my head on the desk sobbing only for that member of staff to say, “Claire, can you leave please, you are blocking the room for other people” and so I left and went into the toilets to compose myself and was told “Claire can you leave please, we need both cubicles”. Not only did I feel suicidal, I felt like a waste of time and space too. I was embarrassed and ashamed and it all ended when the police got involved after I contacted a helpline.

The police were friendly, polite, understanding and even more importantly they actually wanted to understand. It’s a shame not all mental health professionals are like that.

I was admitted to the ward and it’s all been a bit of a blur, I don’t remember a lot of it which worries me. Maybe it’s because I was stressed. I did notice that some of the care was appalling. For example yesterday I asked to leave the ward for a family thing and was placed on a Section 5 (4)…today I was discharged home to an empty house. It makes no sense. I have more than one diagnosis but to them I only have anorexia, how am I meant to get well with a team that fails to recognise the other illnesses that were diagnosed back in my home town. How are they ever meant to support me with crisis situations and medication if they do not understand my presentation? It’s like my dad breaking his leg and them refusing to notice his Crohn’s disease and therefore not medicating it during his stay-it wouldn’t happen. I can have more than one mental illness and I can have mental illness as well as physical illness. I feel like this is often forgotten.

I am not being negative towards the whole service, there were a couple of very helpful nurses and I know some people were doing their best but I feel very let down, very alone and definitely untrusting of my mental health team. I do feel it is very important to speak out when things are wrong, if nobody speaks out then how can anything change?

Crisis teams: What’s wrong with them?

Crisis teams are often made up of mental health nurses and support workers who are on the end of the phone both in and out of hours. Some crisis services are twenty four hours a day whilst others may run until late evening. In my eyes they are as important as ‘999’ is in other emergencies. I know several people who have phoned their crisis team with their hoarded medication in front of them, or whilst walking towards a multistory car park. I know from my experience that it often feels like your last hope to be calling these people. It is a life saving service and incredibly important with hard working staff. I have a lot of respect for them but unfortunately I have had some unhelpful experiences with crisis teams and I know that I am not alone in this.

I have experienced two different crisis teams, one in my home county of Oxfordshire and my current one in South Wales. My experiences were very different and I think it is such a shame that this postcode lottery exists and it isn’t just with mental healthcare, it’s all healthcare.

In Oxfordshire, I did not have any positive experiences with the crisis team. I think part of the problem was that the team were based in Oxford and I lived a forty minute drive away so they were very reluctant to see me because understandably they were very busy and this would have taken a big chunk out of their day, but all the same I was a patient and a patient in need of help. I get very anxious about speaking on the phone to anybody, it is difficult enough on a good day. Building up the courage to phone whilst in a mental health crisis is extremely difficult, with crisis team I don’t know who is going to answer the phone and I’m going to have to say things that I find hard to verbalise. On the occasions that I managed to phone up I was always turned away. They would always find one reason or another why they could not speak to me, among some of the excuses they gave were that I needed to be referred to them (I did not, I was a patient with CMHT) and that my psychiatrist had told them not to engage in conversation with me. That made me particularly angry as it made me feel like a pest and yet I hardly contacted anyone from my mental health team. When I queried this at a later date, everyone tried to convince me that it had not been said. There is definitely something wrong when the crisis team adds to the crisis. I have been in a lot of distress, very suicidal and the crisis ‘care’ has pushed me over the edge. These services are often people’s last resort. They need to be aware of the consequences of putting the phone down on someone who is saying that they are in crisis. I know that there have been times in my life where I have phoned up in tears and ended up taking a deliberate overdose because I felt there was no help for me after being given an excuse as to why they could not speak to me.

Another time I was discharged from hospital with crisis team support and I did not have a phone call or a visit from the team. There was absolutely no contact or follow up.

My experience in South Wales has been better, there have been times when the crisis team have visited me and they stick to their word-if they say that they will call then they call. However, there is still some confusion. My care-coordinator had been in email contact with me and I was told to phone crisis team and so I phoned them out of hours and I was told that I was not on their list so they could not speak to me which had me in tears because I really wasn’t well and I was desperately seeking help and it felt as though I was being passed from person to person but nobody was actually doing anything. The next day when my care-coordinator found out what happened she put in a complaint and it was sorted with an apology but I often wonder if that’s enough. I am lucky at the moment because I live with family, if I am really unwell then I have people home with me during ‘out of hours’ and I can often make it through to morning because of their support but if I lived alone this would not be the case. It was thirteen hours from making that crisis call to seeing someone, if I lived alone then I know that I would have done something. Does an apology cut it when it’s too little too late?

A crisis team is for crisis care, an emergency. I doubt that if you dialled 999 for an ambulance that they would give excuses as to why they could not speak to you, you would not be refused an ambulance. Why is this not the same with mental health care?

If you are in crisis, or in need of help you may find the following links useful:

http://www.mind.org.uk

https://www.papyrus-uk.org/help-advice

http://www.nhs.uk/Conditions/Suicide/Pages/Getting-help.aspx

http://www.samaritans.org/