Why our Human Rights Act Matters...to me

Content Warning: This blog covers stories of seclusion, restraint and experiences within mental health services which are distressing.

Kirsten is a single parent of an autistic son who, from the ages of 14-18, was held in mental health hospitals and subjected to restrictive practices, including mechanical restraint and long periods in seclusion. Kirsten is currently working with BIHR as a lived experience expert consultant on our Human Rights in Children's Inpatient Mental Health Services project.

I’m a single parent of a son who is autistic.  He struggled with his mental health when he was a teenager, and the right help for him didn’t exist in the community. For years, we were let down by services. We continued to struggle until he became so distressed he was a risk to himself and others. He was detained in mental health hospitals from the age of 14.  While detained he was subjected to high levels of restrictive practices, including mechanical restraint and long periods in seclusion. 

When he was put in seclusion he was restrained by several members of staff and stripped naked.  He was put in prison like top and shorts of non-rip material ‘seclusion clothing’, he was left barefoot. He was put in a cell, a small room covered in vinyl with only a narrow window letting in minimal daylight. It was high up on the wall so you can’t reach or look out. He couldn’t tell what time of day or night it was.  He was locked in a totally bare room for up to nine days at a time. He couldn’t leave, he couldn’t speak to his family.  He had no privacy; he was observed through a viewing window 24 hours a day. Even when he used the bathroom. During the day he may have been allowed a plastic chair. At night, a plastic mattress on the floor. If he was considered too dangerous all items were removed and even the bathroom door was locked.  He was put in metal handcuffs to go for a shower on another floor. He had little or no access to TV, books or other diversions.  He craved stimulation but he was left for hours alone with the painful thoughts and trauma running around his head. Sometimes until he experienced hallucinations from sensory deprivation.

I used to wonder if he called for me, if he wished I was there to help him.  When I knew he was in seclusion I wanted to sleep on the kitchen floor, I couldn’t bear my comfortable bed or my sofa, the TV or my book. Because I knew he was alone in the dark and I wasn’t there for him.

The Mental Health Act gave legal powers to put my child in a seclusion cell for weeks at a time. It gave powers to put my child in metal handcuffs, leg belts and other forms of mechanical restraints. It gave powers to transport him in a cage from one hospital to another. My child was not a criminal, he was in distress, frightened and alone. The Mental Health Act gave powers to deny contact between us, to take away his mobile phone, access to a computer, his contact with the outside world.

These practices are de-humanising. My son felt and acted like a ‘caged animal’.  He believed he was less than human, unvalued in society.  As his mother I felt powerless to comfort or protect him. I was angry and afraid every minute of the day.

The Mental Health Act gave powers under law to use these restrictive practices in my son’s care. But what many people don’t know, including many public officials, is that the Mental Health Act has to be applied compatibly with the Human Rights Act. If a provision of the Mental Health Act would result in a breach to a person’s rights, it should not be applied. For my son, there were times when the use of the Mental Health Act amounted to inhuman and degrading treatment under Article 3 and limits to private and family life which were neither legitimate nor proportionate under Article 8 of the Human Rights Act.

Without the Human Rights Act, the Mental Health Act is often applied in a way that breaches people’s rights.  The Human Rights Act means that decisions made under the Mental Health Act can be challenged where they aren’t rights respecting.  

In my experience, Mental health and care systems are run for the many which can lead to restrictive practices. The Human Rights Act is essential because it protects the rights of the individual. I used my knowledge of the Human Rights Act to challenge some of the decisions made about my son’s care and to find alternatives to restrictive practices. 

To me, the Human Rights Act isn’t about court cases and judgements. In some ways, if it’s had to go to court it’s too late as the damage has already been done.  I believe the Human Rights Act is a living, breathing law used in daily practice. It’s a way to protect all of us and to prevent the need for court cases. It’s a way to challenge (both legally and through advocacy) and improve the systems that are responsible for caring for us.

The Joint Committee on Human Rights referred to families as “human rights defenders”. This is particularly relevant for those families of people who can be seen as less than human by services and at risk of abuse in inpatient or community care settings. If you take away or dilute the Human Rights Act, you take away the tool to challenge for people and their families/loved ones.  

As a parent, the Human Rights Act gave me the legal framework to challenge decisions. This was so important for me as a parent facing the weight of professionals who seemed to have so much power over mine and my son’s lives.  I used the Human Rights Act to make timely and meaningful change to my own son’s care and treatment. Some of the challenges I made led to my involvement in changing national policies, particularly around the use of seclusion and segregation with children. I’m now proud to be involved in designing and delivering human rights training to staff working within CAMHS inpatient settings.

Eventually, just before his 18^th birthday I managed to secure my son’s discharge with a bespoke package of care.  He now lives happily and independently in his own home and is attending college.