The writer of today’s blog would like to remain anonymous but is someone who has lived experience of accessing secondary mental health services and professional experience of applying human rights in mental health settings.

The writer worked with BIHR as a member of the project team as part of our recent Health Foundation project, “Embedding Human Rights in Mental Health Recovery.”

The writer has lived experience of accessing both Child and Adolescent Mental Health (CAMH) and Adult (community and inpatient) services, experiences which are now a small part of the writer’s life but which have guided their value base and passions.

Working with this individual to make change through human rights was a breath of fresh air for BIHR, someone who so professionally uses their own experiences to work towards better services and the upholding of rights for others.

We hope you’ll enjoy reading this as much as we did.

“Human Rights and Mental Health, my personal and professional experience.”

I am a human being. I see my identity not of that as a service user or someone who has experienced mental health difficulties, but as me. It feels really empowering for me to be able to choose to harness and share my experiences when I feel it will be beneficial and safe for me to do so.

Before I started working on the human rights project I had heard ‘human rights’ thrown around a bit but I didn’t know much about my rights, what they were, just that I had some. I didn’t know how they applied to me, or even how human rights apply in my role working within the NHS system.

As part of my role in the project, I had the real privilege of being able to sit in all of the training sessions and I found it absolutely fascinating. I had many light bulb moments and I could see staff having them too. Hearing real life stories really brought the training and application of human rights to life. In fact, after attending Carlyn’s first training session, the minute I got home I found myself googling Master’s degrees in human rights law. I was so eager and I just wanted to learn more.

Throughout the project and through learning more about human rights, I found myself really thinking about particular moments I have experienced in services and whether they had been rights respecting or not…

  • I used to write in a journal to essentially get my emotions out on paper and it was a way for me to cope. On one occasion on the ward these were taken from me and I was not allowed to have them to read or write in. I felt lost. Writing in my journal was a massive part of my daily routine and it was the only place I felt safe to have my thoughts, emotions and experiences outside of my mind. I learned through the BIHR project that mental wellbeing was covered under Article 8 (and Article 3) of the Human Rights Act and that having my journal removed from me without an alternative in place might not have been rights respecting.
  • Thinking about my 16 year old self returning to the ward from home leave and being asked to strip naked so staff could check my clothes, just in case I had brought back any razor blades. How vulnerable, alone and scared I felt. I learned that the impact of this action could amount to inhuman and degrading treatment covered under Article 3 of the Human Rights Act, a right which can never be lawfully restricted.
  • I thought about all of the times my room on the ward was bare from any personal belongings, locked away, with only the clothes on my back and how again, I never knew that the Human Rights Act protects our right to peaceful enjoyment of possessions (Article 1, Protocol 1)
  • I thought about the long time I spent with someone right by my side within arms reach of me, wherever I went. I thought about some of the nurses that tried to make this more dignifying and some of those that couldn’t bring themselves to imagine how awful it felt for me.
  • I thought about the time I was heavily sedated with Acuphase, having to crawl to the bathroom to stop myself from fainting, all because I kept trying to leave the ward.
  • And reflecting on the family visits that were always accompanied by a member of staff, I wonder now, does this count as restricting ordinary family life protected by Article 8 of the Human Rights Act, was that a proportionate response to the risk?
  • I reflected on my care in the community, about the times I was offered choices and the times I wasn’t. I never knew that autonomy, having a say over your care and treatment was also covered under Article 8.

It wasn’t until the BIHR training sessions that I came to realise the many times my human rights had not been respected or protected. Reflecting throughout the training, I could see that had I known at 16 years of age, what my human rights were, how they should be respected, what the ‘rules’ were that had to be followed in order to restrict some of my rights and also how I can claim them, I would have probably felt more empowered and in control. If the staff members knew what my rights were, the law around human rights in the UK and their duty to respect and protect my rights, I imagine a lot of the restrictions, traumatic experiences and decisions that were made in my care would not have happened, or certainly there would have been different approaches taken and different outcomes. My experiences of services would probably have felt better too! I’m not placing blame, but I am merely highlighting how important it is for us all to have an understanding of human rights and the law.

I can truly see the benefits of embedding a human rights based approach, from both a service user’s point of view and from someone who works in the Trust.

As a service user, I would want to know what my rights are so I can try to challenge decisions made about my care. I would also want staff to know what they are so they aren’t breeching my rights without knowing. As a member of staff I want to know more about human rights so I can be sure that I myself and my colleagues are respecting and protecting people’s human rights in line with the law. And importantly, so that we are all working towards the same framework.

I do acknowledge that this is not easy stuff. This is complex and it will take time. It seems a bit scary, but taking a human rights based approach gives us a legal framework to work with. We’re all human beings. Don’t you want to know what your human rights are? Let’s start thinking about people’s human rights more and how we can empower people who access our services and their families and carers to know and claim their rights.