Helen Wildbore, Senior Human Rights Officer at the British Institute of Human Rights, celebrates National Mental Capacity Action Day.
Today (27 February) is Mental Capacity Action Day. This is the second annual day of action being marked by the National Mental Capacity Forum.
The theme of this year's action day is 'supporting decision making'. At the British Institute of Human Rights, we work with organisations across the sectors who support people with mental capacity issues. We see every day how vital human rights are for people with mental capacity issues to ensure their autonomy is respected and they are supported to make their own decisions as far as possible. Only recently we heard the sad story of the learning disabled parents in Kirklees who had their new-born child removed and were not involved in the custody hearing, breaching their human rights.
Such stories are a stark reminder of how devastating it can be to have decisions made 'without' you. Unfortunately we have many more examples, but our work focuses on how practitioners and advocacy/support workers can use the powerful language of human rights to get issues resolved in out-of-court settings.
One of the advocates we work with was supporting Lynne (not her real name), a woman with a learning disability who was living in hospital. Lynne needed to use incontinence pads overnight, but the hospital decided to stop providing them. For Lynne this meant she was often left in soiled sheets until morning. Lynne's advocate had been trained by BIHR and recognised that this could infringe Lynne's right to be free from degrading treatment (protected by Article three in the Human Rights Act). The advocate also saw that Lynne needed support to understand what was happening, in order to protect her autonomy (covered by Article eight in the Human Rights Act). The advocate created a short storyboard to talk through the issue with Lynne and explain about her rights. Lynne was pleased someone had understood how she felt and agreed that the advocate could discuss her rights with the hospital. As a result, the hospital re-instated the pads so that Lynne would not face hours of discomfort and embarrassment each night.
One of the more challenging issues for public services is respecting the rights of people to make decisions which others might think 'unwise'. Our right to make our own decisions and choices (protected by Article eight in the Human Rights Act) includes 'unwise' decisions. That could include who we have relationships with, whether we drink alcohol, or even how we spend our money. This is where the Human Rights Act is so important for people using services, as it can help ensure that our decision-making is respected, unless there is a genuine concern about our capacity to make a particular decision. The Mental Capacity Act sets out a process to ensure any interference with our autonomy should still respect people's rights to be involved in decisions as much as possible.
When Daisy (not her real name) was living in a rehabilitation unit and she was refusing to shower, staff at the unit used the framework of the Human Rights Act to help them decide how to approach this. Although they might have thought the decision 'unwise' and they were concerned about the rights of other residents, they recognised that they couldn't force Daisy to bathe. Instead they thought about Daisy's rights and reflected that she may be responding to years of living in care. They supported her to take back more control over her life and regain her independence. Eventually Daisy began showering regularly.
Supporting people to make their own choices and participate in decision-making can be empowering for staff running services too:
"Using a human rights approach has helped us, in difficult times, to give us back our social work values in a meaningful way." Social worker on BIHR's project"
By bringing universal human rights standards to life here at home, the Human Rights Act ensures they can have a real impact on the frontline of service delivery. To help spread this learning, BIHR has just launched a series of new booklets on mental capacity and human rights. One set is aimed at people using services, to help empower people about their rights and how to use them. A second set is aimed at practitioners, to help them think about how human rights can help them design and deliver good services. Having the knowledge and confidence to use human rights in everyday settings is crucial to ensure no-one gets left behind and we try to avoid another story like the family in Kirklees.Suggest a correction