Interview with an ex-patient: Claire's story
Claire is a student living in Scotland. She has a diagnosis of bipolar disorder, and has spent time on an adult acute ward as both a formal and informal patient.
As part of the Patients' Rights Pathway project, we interviewed Claire - not her real name - to find out more about her time as a patient, and asked her to talk about her experience of human rights on a mental health ward.
What does it feel like to be admitted to a mental health ward?
I've been admitted both formally and informally, and at different stages of my illness. No matter whether I was feeling manic or depressed, I was always terrified of the unknown. I felt disempowered and lost. And confused. Time suddenly dominates everything, and often feels never ending and empty.
It can sometimes feel devastating and punitive, but it can also be comforting when a sense of safety and security develops. It can really help to know that someone is looking after you 24 hours a day.
On the ward, it's common to feel like there hasn't been much, if any, relevant information provided. Leaflets and bursts of information are all well and good, but the small details - the 'whys' - make all the difference.
Do you have any examples of when your rights were not upheld?
One example that comes to mind is when the crisis team came to my home during the holidays: a severe lack of sleep was having an increasingly negative impact on my symptoms and I needed to see someone. They informed me that I needed to attend the local inpatient unit to be assessed by a doctor for a night sedation.
After much persuasion and coercion, I found myself in their car enroute to the hospital - under the promise that they'd stay with me and take me home when I got my medication. When we arrived, I had to wait a very long time for someone to see me.
After a while, the crisis team left and I was left to wait by myself - alone and confused. After waiting there for ages, I left the ward looking to walk home. Before I knew it I was being chased by two men and so I started to run. They grabbed me and dragged me into the ward, where I was threatened with medication and told "that's what happens when you run away". Nobody believed me that I wasn't a patient there. I was terrified. They didn't even have the correct paperwork. I don't know how the staff expected me to trust them again after that.
What about examples of when your rights were upheld?
One that sticks out in particular was during my time on an intensive psychiatric care unit (IPCU). I was under constant two to one observation which meant that I had to be watched all of the time, including when I showered. Sometimes there weren't enough female staff to watch me, so staff used to 'borrow' female staff from another ward to watch me when I had to shower. I feel that this is a good example of my right to dignity being upheld.
Why do you feel it's important for staff to be aware of rights?
Most people are completely unaware of their rights. Trusting staff are informed and aware of your rights can be an instant foundation of the relationship between you and the ward staff. If it's a given that someone is on your side and is wholly ensuring your wellbeing it can offer you relief.
As a patient, my main goal was just to make it through the day. I don't think it's enough to just present patients with a list of their rights on admission or sporadically throughout their stay. Human rights should be engrained into the everyday practice and routine of all ward staff. Making sure that patients understand how their rights apply to everyday life on the ward is vital. People don't need a list; they need context.
Do you think the Patients' Rights Pathway will help?
The Rights in Mind booklet is well laid out, clear and concise, and evidence based - so I think it will be really accessible to staff on busy wards.
It will be useful to consult in practice, particularly when co-creating care plans. I also think it will be encouraging for staff to know that they're on the right path, and where some learning is required.
Do you have any messages you would like to give staff on an acute wards about human rights?
I think it's important not to be tokenistic; and don't forget that you're looking after a real person. Bear in mind how you would feel if the tables were turned.