Background
Serious human rights and equality concerns emerged regarding the lived experience of service users in Dublin’s North-East Inner City. In 2009, drug service users, their representatives, and community activists formed a coalition after concerns were raised about the practice of and over-reliance on urine testing and the lack of information and choice on pathways to health for each service user. A study was conducted1 to identify issues experienced by service users of drug treatment projects and to review the key monitoring points and changes arising from the Health Service Executive (HSE) Action Plan. A great emphasis of this study was on peer-led processes, as the voice of the service user is rarely heard.

Methods
In October 2022, an advisory group consisting of Inner City Organisations Network (ICON), Service Users Rights in Action (SURIA), and Community Action Network (CAN) was established. This group reviewed previous peer research before developing and piloting a questionnaire, which included questions on demographics, treatment plans, supervision of urine sampling, engagement, and complaints mechanisms. The survey was implemented in early 2023 and the results analysed and reported on later that year.

Results
The survey consisted of 138 interviews, with 36% of respondents living in Dublin 1, while another 36% were homeless.

Entering and remaining in recovery is more difficult in homeless hostels and on the streets. More than three in four (77%) of all those who responded were between 36 and 55 years of age. More males than females (58% vs 41%) participated, as women tend to experience additional barriers when accessing treatment. For example, mothers are expected to make huge leaps in recovery, further fuelling the assumption that because they are on an opioid treatment programme they are incapable of looking after their children.

The survey interviewees came from disadvantaged and marginalised communities, which are disproportionately impacted by the negative effects of drug use activities. The overall statistics mask true deprivation and the average figures tell nothing of the real experiences of the most disadvantaged. People in deprived communities are twice as likely to experience drug-related intimidation than others. More than one-third of respondents reported a considerable problem with people using or dealing drugs in their local area.

Many service users felt that there was no end in sight for their treatment journey: 87% had never been offered an alternative to methadone treatment. Furthermore, 57% of service users did not know how to make a complaint, while one-half did not know what a care plan entailed (49%). Many participants were told they were not ready to move on from methadone, even when requesting a change. Service users felt stigmatised because they had an addiction or because they were in treatment.

They felt watched in shops and in the community, even when they were clean, often excluded by family, and experienced discrimination from healthcare services. Many reported that people’s attitudes changed once they learned that the person they were dealing with was on methadone: the respondents felt that their opinions ceased to matter and they were treated as second-class citizens.

The service users also reported poor quality of life as a result of addiction and prolonged treatment: more than one-half (56%) had been in treatment for more than 16 years. More than one-third (35%) said that methadone had not improved their quality of life. Service users voiced a huge issue with lack of control regarding their own treatment, with many expressing that they felt chained to the clinics they had been assigned to by ‘liquid handcuffs’. Looking for employment, going on a holiday or moving house were not options for many, as frequent visits to the clinic determined their movements and controlled their daily lives. When asked, respondents expressed that they had many goals in life, though the majority of them felt they had not reached them.

Most goals related to entering into new treatment and becoming drug-free and generally improving their quality of life. However, many respondents were told that they had to stay on methadone as they were not ready to detox. For those who did ask for an alternative to methadone, they felt their requests were not being listened to and their voice in their treatment choice was not being heard.

Conclusion
The study recommendations include the cessation of the use of urine sampling by all drug treatment service providers and other agencies; meaningful engagement and participation for service users (including that the HSE engage with service users to review the treatment choice); and for the HSE to engage with service users
to develop and implement a positive action plan to ensure that information on a complaints system is available in an accessible manner.

1    Inner City Organisations Network (ICON), Service Users Rights in Action (SURIA) and Community Action Network (CAN) (2024) Trapped in treatment: applying a public sector equality and human rights duty approach to the human rights and equality issues identified by service users of drug treatment services in the North-East Inner City (NEIC). Dublin: ICON/SURIA/CAN. Available from: https://www.drugsandalcohol.ie/40596/