June 12th 2020, I was discharged from my Community Mental Health Team (CMHT) after being under their care (on and off) for eleven years! Now, I’m very aware that with my audience being so big there are readers who don’t have a lot of insight into mental health services and therefore may not appreciate just how big an achievement discharge is. And that is the aim of this blog post – to provide insight and to educate readers about mental health services…
You can be referred to Services in various ways…
I was eighteen when I was first allocated a Community Psychiatric Nurse (CPN); I was sort of lucky in the way I first came into contact with Services because I didn’t have to be referred and sit on a waiting list for months on end. However, I was definitely unlucky too, in that I was only put under the care of the CMHT because I had attempted suicide and been sectioned under the 1983 Mental Health Act, and apparently the automatic aftermath of being sectioned is that you’re allocated a CPN upon discharge.
I recognize my luck in the situation because I know of the many instances where people have been referred to their CMHT through their GP and have then had to sit on a lengthy waiting list. The saddest thing about the waiting lists is the fact that all too often, the person’s mental health deteriorates to the point where they attempt or succeed at committing suicide. This happens for a number of reasons, but the main one is that there’s often the development of feelings of hopelessness and a conviction that Services don’t care enough about the person to rush through their referral through.
Something I don’t often talk about is that I was actually referred to Child and Adolescent Mental Health Services (CAMHS, now referred to as CYPS – Children and Young Persons Services) when I was 15. At the time, the abuse was happening, but no one knew; so, I self-harmed, but the reason I was referred was because I was being bullied. I was on the waiting list to have an assessment with someone for so long that the bullying had actually stopped before the appointment eventually came through. It does make me wonder though; would my mental health have deteriorated to the point that I did if the referral had been quicker? And would the abuse have continued as long as it did? Or would I have ended up confiding in my CAMHS worker and have them support me to report it?
You can have several different professionals involved in your care whilst under Services…
Having been under Services for so long, it’s probably more than understandable that I’ve had a vast amount of CPNs, Psychiatrists and other professionals (like Psychologists and Occupational Therapists) involved in my care. When my mental health was at its most poorly, every time a professional assigned to me care would leave or change it felt like a whole abandonment and insult! I was so paranoid that some of them were leaving because I was too complicated or that they had grown hopeless and thought that I would never get better, that I would get so upset and angry with Services on a whole.
I debated whether it would be fair of me to use this opportunity to discuss the professional who I’ve found the least helpful, but finally decided that I will because I’m not using it as a chance to categorically slate the person and their profession! So, on one of my very first admissions to a psychiatric hospital under the Mental Health Act the ward staff and my Psychiatrist made the decision to refer me to an Art Therapist who was based in the hospital. I remember having one assessment with her and it was Winter, so I drew a snowman and she said we had to talk about why I’d chose to make the balls of snow different sizes… I was like “because that’s how you draw – and build – a bloody snowman!” At the time, failing to find the Art Therapist helpful made me question the judgement of those professionals who had mistakenly thought she would quicken my mental health recovery and chance of discharge from hospital. I wondered if they actually knew what was best for me or if I was being pigeon-holed and them making assumptions on what would make a difference.
Mostly, the basic number of professionals involved in your care is two; a CPN, and – if you’re on psychiatric medication – a Psychiatrist. These two will then assess whether there’s a need for other professionals and specialists to become involved in your care depending upon various aspects, such as your diagnosis, any trauma you’ve experienced, and your safety risk.
Some Services aren’t always good enough to help or to make a difference…
About three years into my mental health deteriorating, I was in a psychiatric hospital when a Psychiatrist made a recommendation that would later, save my life. He advised that I be admitted to a psychiatric hospital that specialised in my diagnosis of Borderline Personality Disorder (BPD, but now referred to as Emotionally Unstable Personality Disorder). This Psychiatrist was the first professional to recognize and acknowledge that my local Services weren’t adequate or efficient enough to aid my recovery and support me in improving my mental health.
Immediately after my discharge from his care, my CPN and community Psychologist began searching for an appropriate hospital. They found three that were nearest in geography terms; one of them refused to accept my flight risk (I used to run away a lot!), another thought I needed something more intensive, and the third agreed to assess me! On meeting with the Ward Manager and her Deputy, though, I found out more about the day-to-day life on the BPD ward that was over 100 miles away and refused to go. Hearing about the incredibly structured routine on the ward, was slightly terrifying and I was reluctant to commit to such strict ways when the hospital’s average admission claimed to be 12 – 18 months.
Unfortunately – or fortunately, depending on which way you look at it(!) – the decision was taken out of my hands after a suicide attempt in 2012 saw me end up on life support in Intensive Care, I was sectioned under the 1983 Mental Health Act and sent to the specialist hospital. It took me a long time to adapt to being in a psychiatric hospital for so long (my admission was two and a half years in total!) and to have my days planned by the staff; but eventually I acknowledged that being there really was saving my life. When a member of staff told me that had I lived locally to the hospital I probably would have been admitted after my first suicide attempt in 2009 and maybe my admission wouldn’t have lasted so long and I might have never got to the point where I had needed to be on life support; I was saddened to think that services really are a postcode lottery.
I think that the reasons why being in a specialist hospital was the most helpful thing for me was because it took away my freedom (which I was using to self-harm and attempt suicide) and allowed the chance to undergo Dialectical Behaviour Therapy (DBT) which was the recommended treatment and therapy for people with BPD.
‘Discharge’ means something different to each individual…
Since announcing that I’ve been discharged from Services, I was asked by someone what that actually meant, and I was kind of surprised at myself for not considering that some people may not know this! Then I realised that actually, discharge can mean something different to different people and I can really only talk about what it means for me.
So, technically – for me – being discharged means that I’m no longer under the care of my CMHT and I’m not assigned a CPN. Which mostly just means no more weekly appointments with her! Being discharged doesn’t mean I’m without support for my mental health though; I still have access to my local Crisis Team, I still have a Social Worker, and I’m still under the care of Richmond Fellowship.
One big change that is a result of my discharge, though, is that it means my GP is completely in charge of prescribing my medication. Whilst under the CMHT my Psychiatrist made the decisions around my psychiatric medication and would instruct the GP on which medications I needed and what doses I should be on. For me, this was a whole lot easier because I think it makes sense that someone who is knowledgeable on such medications takes the lead on prescribing them! To avoid confusion and the GP being kind of thrown in the deep-end, the CMHT are putting instructions for my medication in my discharge letter just to tell the GP that I need to stay on what I currently take (Fluoxetine, Mirtazapine, Aripriazole, and Lamotrigine) and that there’s room to increase some of them.
Another difference in discharge for each person is the reason for the discharge; I mean, it’s pretty likely and obvious that it means the person’s mental health is better and more stable; but there could be more to it. My discharge isn’t just because I’m doing well, it’s also because I need to undergo Complex Trauma Therapy and they won’t see me until I’ve have had at least 6 months stability and without the involvement of Services. Initially, this didn’t make sense because I thought that surely it should be the other way round and you should need to have CMHT input whilst doing such therapy but the Therapists argument is that if you need a safety net then you’re not ready to do therapy.
In addition to all the technicalities of discharge, there’s also something to be said about what it actually means psychologically to someone. for me, it means freedom! And it’s a huge achievement! It makes me more hopeful for my future and assured that I might actually have one that’s free of mental health services!
A Psychiatric Hospital isn’t always the safest place…
I don’t know how many times I’ve heard Police Officers or A&E Doctors and Nurses disagree with the decision of mental health professionals who’ve deemed that a psychiatric hospital isn’t the best place for me. I think that to some people, it’s baffling to see someone who is feeling suicidal or who is self-harming be told that they won’t be admitted to hospital because it seems like that’s the obvious place for that person to get help and support and be kept safe. However, sometimes and for a few reasons, a psychiatric hospital isn’t actually the safest place to be.
I’ve been assaulted twice in a psychiatric hospital. The first time I was sitting on the loo in my en-suite bathroom when a very poorly patient let herself in and was convinced that I was hiding her baby in my toilet. She then began trying to get into the loo whilst I was on it! I screamed and pressed the emergency buzzer and the staff came running to restrain her. The second assault was a sexual one and was done by a man who clearly struggled with impulse control; because of the nature of that assault, the Police were called but the man was deemed to be lacking the capacity to be found guilty of the assault.
Another way in which I’ve experienced psychiatric hospitals not being safe was when I was in the specialist hospital. I quickly learnt that the other inpatients would show one another their methods of self-harming and this escalated when someone snuck a knife onto the ward and everyone passed it around knowing full well what each person was doing with it. Knowing that they were supplying the other person with what they needed to hurt themselves. Finally, the staff realised after people were presenting with the same sort of injuries and the ward was put on lockdown so that the entire place could be searched. But if you think that was bad, things were even worse on the Psychiatric Intensive Care Unit (PICU) upstairs; a psychotic patient ended up killing another patient through suffocating them. Afterwards, everyone in the hospital had their leave from their ward stopped until the journalists and camera crew left the carpark!
Being prescribed psychiatric medication can be difficult…
I remember when I first started psychiatric medication in 2009, the Crisis Team had come to my Mum’s home (where I used to live) and decided to convene a Mental Health Act assessment. I ran to my bedroom crying and one of the two Psychiatrists required to section someone under the Act came up to talk to me. He said that I believed it was time to start an antipsychotic medication for the hallucinations that were telling me to self-harm and leaving me feeling suicidal. I was admitted to a psychiatric hospital and began taking Aripiprazole.
With it being my first psychiatric medication, I didn’t know/realize just how long it takes for it to work or begin to help. I think it’s kind of wrong that it takes so long because really, you need that help to manage your symptoms ASAP! Kind of like painkillers; most tablets take up to half an hour – quicker if they’re intravenous. It’s so sad to think that so many people have self-harmed or committed suicide whilst ‘waiting’ for their psychiatric medication to make a difference because they’ve either given up hope that things will change, or they’ve become too overwhelmed and have begun to find things no longer tolerable.
Over the following three years I was trialled on various different medications that had very little impact on my mental health, until I was admitted to the specialist hospital in 2012. In hospital every single inpatient was on some kind of medication and when I was prescribed some I felt more comfortable taking it because I knew it had been prescribed by people who saw me 24/7 and not just on a weekly appointment. The hospital staff had a better idea of what I was going through and by my discharge I was happy with my three psychiatric medications.
When I moved back into the community I had to register at a GP practice and on my first assessment appointment with them, they said that they were shocked at how much medication I was on at such a young age and that they’d really like to stop everything! I can’t even begin to describe how much I cried at this! Thankfully, I had my Richmond Fellowship support worker with me on the appointment and she was able to explain to the GP why I was so upset and how important the medication was to my mental health. The GP finally agreed to continue prescribing things on the advice of my community Psychiatrist and when, after being back in the community for a little while, I had a relapse they agreed to the Crisis Team’s recommendation that I start another medication!
I now take Mirtazapine, Fluoxetine, Aripiprazole, and Lamotrigine. I debated choosing, which is the most useful, but I think that they all kind of work as a team! But the two main ones – I think – are the Aripiprazole and the Mirtazapine. The Aripiprazole is the anti-psychotic that has gotten rid of the hallucinations, and after seeing the impact not taking it had in 2018, I’m more than convinced that it’s necessary. Then there’s my Mirtazapine, which was increased about three weeks ago after the wait for surgery on my torn tendon began to affect my mental health. After just under two weeks, I found myself going to my bathroom with a sharp and within seconds of sitting on the floor it was as though the thought and feeling has just… gone. Like, I didn’t even have to try and cope with it, manage it, get through it. The medication was working.
There’s still mental health stigma within Services…
In 2009, I had ran away and had to see a Psychiatrist who asked me a series of questions – I didn’t realize that each question corresponded to a different symptom of BPD – and concluded that I should have the diagnosis of it. However, when I returned home and saw my usual CMHT, I was told that they were reluctant to give me that diagnosis because once I had the label, it was a ‘death sentence.’ They said that once professionals knew I had BPD then they wouldn’t ‘touch’ me. Wouldn’t help me. But I was eager to have a name for what was happening to me, to know that I wasn’t alone and that there were others out there experiencing this. Others who were recovering and getting better from it. I thought that having a diagnosis would give me hope.
Literally as soon as I was officially given the diagnosis, I was treated differently by mental health and medical professionals. Before BPD, everyone was concerned and caring. Afterwards? They were dismissive and unkind. I think that a huge reason for this was the misinterpretation that people with BPD are overly dramatic attention seekers who aren’t really mentally unwell in the same way as those with Schizophrenia are. I guess that this misunderstanding and discrimination is the reason why specialist Personality Disorder Services are required to support and help those diagnosed with that. And it’s definitely a big reason why my local Services weren’t adequate enough to facilitate my recovery. Fortunately, they’ve devised specialist Services and those who aren’t specially trained e.g. staff in the Crisis Team, are typically a lot more understanding than they used to be.
But it isn’t just about stigma that professionals hold; when I was in the specialist hospital, there was a PICU upstairs and everyone on our ward would tell horror stories about what it was like up there and what the patients there were like. It didn’t help when one of them murdered another one though… But it meant that after running away from the hospital, attempting suicide, ending up on life support, and being transferred to the PICU, I was absolutely terrified of what was in store! I’d been in a PICU before but the horror stories I’d heard about this one left me so anxious and pretty terrified that I cried and cried when they told me where I was going.
How it feels to be sectioned/under the care of Services…
Whenever I’ve been granted leave whilst sectioned under the Mental Health Act, I’ve felt as though I’ve had a giant sign on my head telling the general public that I’m a detained patient! It didn’t help when they refurbished my local CMHT centre and wrote on the new sign that it was for mental health services! I campaigned and successfully had it changed to purely the name of the building so that the general public didn’t know that if someone was going into there, they probably had a mental health problem. It’s sad that we live in an age where having such an illness could result in abuse and bullying, but it’s also reality.
I hope that this post has providing you with some insight and knowledge into Services and what it’s like to be a Service User!