Mair Elliot (@MairElliott1 ; mairelliot.com) is a young patient advocate who uses her personal experience of mental ill health and autism to challenge and teach. We are very proud the Mair has produced this blog for us to mark the start of Children’s Mental Health Week #childrensmentalhealthweek. We will be publishing 4 blogs this week. Mair’s blog is about her experience of the mental health system and how this nearly broke her. She gives a compelling account of why good communication and compassion are at the heart of good care. Later this week we will also be publishing blogs by Barry Nixon about workforce issues, Ayasha Shadat about integrated care, and James Kendrick about young people’s rights. We also have an editorial by Robin Barker (1)(@robinfromcamhs) who is the director of Healthy Teen Minds which is about the journey we have to travel to get to a position where CYP mental health is given the priority it deserves. We will also be hosting a twitter chat reflecting on the messages in these blogs on Wednesday 12 February at 8pm UK time. To join in the chat please follow and use #ebnjc.
I was asked to write this blog for the Evidence Based Nursing journal. I am not a nurse, neither am I a health professional. I do however have plenty of experience of nursing and nurses. In fact, I probably spent more time with nurses than I did with my own friends during my teenage years. I can tell you lots of stories about nurses, both flattering and reputationally questionable. My stories come from the other side; the patient side. I fell ill with mental illness when I was 14. It quickly spiralled into a life-threatening situation that would see me spend a considerable amount of time in intensive community and inpatient psychiatric care over an 8-year period. I am also autistic, which complicated things.
I don’t know the details of mental health nursing protocols and procedures, but I do know what makes a good nurse for a suicidal young person. I also know how the interface between mental health care and patients’ effects how I perceive nurses and other healthcare professionals. To be quite frank, I don’t trust the system so why should I trust the staff working in the system? This has played a considerable role in how I interact with health professionals, particularly nurses, over the years. Whilst logically I could understand that the majority of staff were trying their best, emotionally I couldn’t bring my guard down. I couldn’t tell when I’d be shipped off to a hospital miles away from my home, or transferred with no warning, or have therapeutic intervention stopped suddenly. There was little consistency.
I have very little point of reference for a stable, consistent therapeutic relationship, where I don’t need to continually prove I’m sick enough to be worthy of support. Therefore, it makes sense that I struggle to engage and trust in mental health professionals. My experience is that they caused me more pain, build my expectations and then let me down, and wait until the last minute to provide patchy support (unintentionally or not). It’s almost as if I’m in an emotionally abusive relationship. Why should I invest my trust in professionals, when this is my previous experience? The most disturbing thing to me is that had I not had these experiences of mental health services I wouldn’t have these trust issues and insecurities. I grew up in a loving, stable, nurturing environment, this fear of trust, abandonment and neglect didn’t exist before I received help from mental health services – it was mental health services that caused them.
This is a systems issue, and it will take the powers-that-be and those working within the system to change it over the long-term. However, that does not mean there aren’t changes individuals can make to ensure patients get better care in the shorter-term. Nurses can make a massive impact on someone’s quality of care, even in a broken system.
The best and most important quality that I can say has made a nurse helpful or unhelpful, in my eyes, is communication. When I first transferred to adult services, I had a CPN (community psychiatric nurse) whom made a huge impact on my life in a positive way. It was all down to how she communicated. She was thorough and truthful, but not in a way that was either dry or scary. I knew what was happening, where and when certain referrals went through, what the short-term goals and steps were, what were the longer-term goals and steps were. There wasn’t any ambiguity or doubt in my care. Even when she didn’t know something, she would tell me.
I also felt listened to. I have often found that when I try and speak to mental health professionals they aren’t quite there in the room. They are thinking about the previous and next patient, they are thinking about the paperwork they need to do, they are thinking about everything else, and not paying full attention to what I am trying to communicate. However, with this particular CPN she was there in the room with me. I had no doubt that she was fully attuned to how I was feeling and what I was saying. This made me feel empowered to seriously consider and work towards recovery. Even when I was at my worst, I trusted her enough to call her when stood on the edge of a cliff with full intention of jumping. I knew I would be thrust into yet another admission, but I still felt comfortable dialling her number and asking for her help.
To contrast that, I have had experiences were communication was so lacking that I had no clue if I was even being seen or on the books of services. I felt utterly lost and let down. My family and school spent a considerable amount of time trying to communicate with services to no avail. The whole experience made me feel as though I was a burden, I wasn’t deserving of support. That the staff, particularly the nurses, thought I was wasting their time. As a result, I felt more suicidal and determined to kill myself. I would not pick up the phone to ask for help, I knew it wouldn’t come.
I know that lacking time, resources and staff is a battle many nurses are facing in mental health services. I know that, inevitably, compassion fatigue creeps into those having to meet the demand that is ever increasing. However, as a patient, I ask of you one thing; talk to me, listen to me, communicate with me. Nurses are in the position of being key communicators, and so in my eyes, are far more important than any consultant. The nurses that took the time to sit with me in my darkest hours, the ones that celebrated with me even in the smallest of accomplishments, the nurses that told me the truth and not some feeble offering of sickly quotes; they were the ones that made the difference. The ones that instead of getting annoyed each time I absconded from the ward, took the time to understand what I was trying to communicate by absconding from the ward. These nurses were attuned to what I was communicating, either through spoken language or through behaviour. As a result, were far more capable of communicating with me and building that therapeutic relationship. One of the defining features of humans is our complex, intricate and effective communication. In a system that is broken, communication is the one thing that can suture it together.