The Service Users Rights in Action (CAN and SURIA) is an independent group consisting of service users, former service users, medical professionals, service providers and community activists. We have been continuously carrying out research that highlights the many difficulties encountered by the Irish drug service user for almost a decade, since 2012. This Report, entitled “Nothing About Us Without Us”, is informed by 121 surveys that demonstrate the current service user voice regarding their experiences and treatment as they use modern day methadone services. 

It is both a stand-alone piece of research of current methadone maintenance treatment (MMT) (Foucault 2008) practice and also part of the longer-term monitoring by SURIA of the progressive realisation of the right to adequate health for those who avail of MMT. As a stand-alone piece, this research explores the current life narrative of the MMT client, however as a broader part of the long-term monitoring of the realisation of rights-based treatment for MMT clients that SURIA has undertaken, this report is the latest of four sets of data that SURIA have collected since 2012. The advantage of drawing from multiple sets of data is that it highlights the progression or regression of rights-based treatment, demonstrates trends and patterns in treatment and enables SURIA to seek accountability from services and key stakeholders. It informs our monitoring of MMT from the platform of human rights. The use of Participatory Action Research, which will be discussed, allows us to frame practices in a way that this can be achieved. 

Part One: This presents the data from the fourth round of peer led research conducted by SURIA in late 2019/early 2020. This research sought to represent the lived experience of the MMT client through the surveying of 121 MMT clients. The analysis of this data through the lens of human rights, evidence-based practice and the international evidence base presents the Irish system as one in need of serious reform. Clients, many desensitised or unaware of the ethos and objectives of holistic methadone care are staying on methadone longer, providing more urine samples, have a low quality of life and are rarely enjoying a life where their rights are being realised and a meaningful form of recovery is an attainable goal. Also, many feel controlled, surveyed and stated that their lives and choices were severely limited by the duties and obligations which their clinic required. 

Part Two: This section locates this standalone piece of research into the longer-term monitoring and campaigning work of SURIA. We describe how PAR is ideally suited to the objectives of this Report, given that it is a cyclic research methodology that excels in emancipatory, monitoring research practice. We also compare and contrast the evidence emerging from this round of research with baseline data gathered in 2012, 2017 and revisited in 2017/18 as part of a Public Sector Duty Pilot Project under the auspices of The Irish Human Rights and Equality Commission (IHREC).