Sarah Yiannoullou, Managing Director for the National Survivor User Network (NSUN), shares her reflections on using a human rights approach

The National Survivor User Network (NSUN) is a network of people who have and do experience mental distress who want to change things for the better. NSUN connects people and influences policy, practice and perceptions by amplifying the experiences and aspirations of our members.

Mental distress can often lead​ ​to disadvantage and discrimination, being ignored and isolated, so NSUN’s vision is to be a network with the strength to challenge inequality and improve lives. NSUN has always considered itself to be a rights-based organisation and provides a platform for the direct, collective and independent voice. Working with BIHR has increased our understanding and confidence in how we communicate and assert our rights.

We have been a partner in two ‘Health and Human Rights’ projects led by BIHR over the last six years. The recently completed Care and Support: A Human Rights Approach to Advocacy three year project focused on increasing control and autonomy over treatment decisions for people with mental health and capacity issues and ensuring they are treated with dignity and respect. The combination of staff and member training, partner meetings, gathering case studies, roundtable events, road shows and developing resources provided the continuity and support that was needed to ensure we got the maximum benefit from the project.

Embedding human rights

In my role I was able to use the language of human rights and ensure that this was threaded through all of our work and contributions at a policy level. The Members’ Manifesto was reviewed and updated in March 2017 and was strengthened by our collective confidence to represent the views shared by our members and the BIHR programme for members and the team. With this confidence came more creativity in how we gathered the experiences and views of people to make collective challenges and communicate messages in order to influence services and support.

Challenges

Initially, thinking about human rights legislation was a challenge. How it translated into practical action and how it could be used for redress of injustice seemed inaccessible and not immediate enough. We realised over the course of the project that it wasn’t just about how we can or can’t use the legal system but how we use the language of human rights to challenge injustice and breaches of our rights in every day practice.

The training sessions for the team and NSUN members helped to develop our understanding of the Human Rights Act as a foundation law which all UK legislation should be compatible with. This supported our existing concerns about how we recognise and address the coercive powers exercised under the Mental Health Act as a breach of human rights. Unfortunately this fell outside the scope of the project, but we do hope to explore this further with BIHR.

Using human rights in policy work

In 2015 NSUN was invited on to the Mental Health Taskforce to contribute to the development of the Five Year Forward View for Mental Health published February 2016. We were able to co-ordinate collective contributions through our service user/survivor researchers and the wider membership. We were persistent in promoting rights based language rather than the use of ambiguous recovery language, and in putting more focus on the importance of ‘real involvement’ of people needing NHS services and support. Our contributions had some influence on the final report but not as much as we wished. This approach was also taken in our involvement in the CQC Mental Health Act report Advisory Group.

NSUN provided a collective response to the Mental Health Act (1983) Code of Practice consultation and when it was published April 2015. The revised code contained more focus on human rights and a chapter on the protection of patients’ rights and autonomy. NSUN produced a briefing on the chapter for people detained under the Mental Health Act on an inpatient unit in west London. It was evident that many staff were not as informed as they should be about the revised code or about the importance of protecting basic rights within secure settings. Staff were at best ‘inadvertently’ breaching rights relating to access to communication, autonomy, family life and freedom through blanket rules and restrictive practice. Of course, with a rights based Mental Health Act there would not be the need to rely on the Code of Practice to provide the focus on human rights.

What’s next?

The programme with BIHR provided an opportunity for us to explore how we use human rights as a framework and how we share our learning. Last year we launched the Member Campaigns which enables an individual to present and work on an issue that they are passionate about as a result of their personal experience. We support the individual to communicate with the wider network, gather further evidence and plan how they will use this to influence and make changes. We are now a long standing member of BIHR’s Human Rights Alliance and continue to have strong links with other rights based organisations. We have learnt a lot from other partners and organisations through hearing about their approaches and challenges and hope we can do the same with our member groups.

NSUN is committed to campaigning for the protection of the Human Rights Act and ensuring that it is properly understood as being central to all other law, especially since the Queen set out the government’s intention to ‘reform mental health legislation’ in her 2017 speech. We will continue to raise the ways in which the Mental Health Act is in breach of human rights and lobby for a rights based Mental Health Act.

My take on human rights

Human rights provide us with a universal language that is less able to be misinterpreted or misrepresented as we’ve seen with the likes of co-production, recovery and peer support. Human rights belong to us all, it’s a great injustice that people and systems attempt to restrict and remove these basic rights.