“I know they can’t run the service to suit each individual but we are junkies, you’ve got to f*****g accept that there is going to be a bit of chaos with it I mean what is the point in the service?”
EAST RENFREWSHIRE ALCOHOL AND DRUG PARTNERSHIP
Hidden Population Needs Assessment Exploring the Experiences and Treatment Barriers of Problem Drug Users in East Renfrewshire
(Research Assistant, East Renfrewshire ADP)
With the assistance of Peer Researchers
Mark Dunn and Steven Hughes
Table of Contents
Table of Contents 2
Executive Summary 5
1 Introduction 8
1.1 Definition and impact of problem drug use 8
1.2 Focus on East Renfrewshire 9
1.3 Defining a Hidden Population 10
1.4 Previous Research into Treatment Barriers 11
1.5 Aims and Objectives 14
2 Method 15
2.1 Design 15
2.2 Interview Schedule 16
2.3 Participant Recruitment 16
2.3.1 Recruiting Peer Researchers 17
2.3.2 Training Peer Researchers 18
2.4 Data Collection Process 19
2.4.1 Interview Process 20
2.4.2 Ethics 21
3. Data Analysis 23
3.1 Using thematic Analysis 23
3.2. Conducting the Analysis 24
4. Participant Characteristics 25
5. Exploring Barriers to Accessing Treatment 27
5.1. Previous Negative Experiences 27
5.2. Confidentiality and Information Sharing 28
5.3. More Informed Advertising 30
5.4. Personal Choice 31
6. Positive Aspects of the Service 32
6.1 Structure and Stability 32
6.2 Therapeutic Alliance 33
7. Negative Aspects of the Service 35
7.1 Authority and Lack of Understanding 35
7.2 Experiences of Methadone 37
7.3 Services as a Trigger 38
8. Pharmacy Experience 39
8.1 Treated Differently 40
8.2 Pharmacy Layout 41
9. Participant Perspectives on Improving Treatment Services 42
9.1 Peer Support 42
9.2 More Flexibility and Understanding 43
9.3 Offering Consistent Activities 44
10. Study Limitations 45
11 Suggested Improvements 46
11.1 Barriers to Accessing Treatment 46
11.2 Suggested Changes to the Current Service 48
12 Conclusions 50
Appendix 1 – Needle Exchange Leaflet 56
Appendix 2 – Initial Themes………………………………………………………………………57
Appendix 3 – Final Themes 58
Appendix 4 – Participant Data 59
Appendix 5 – Results from Participants using Pollok Community Addiction Team 63
The author would like to thank Mark and Steven for their hard work, commitment and input throughout the project and for their assistance in compiling the final report. Thanks also go to the service users who provided their initial thoughts and knowledge to help shape the design of the project.
To the steering group members Andy Fox (Acting Service Manager), Janice Thomson (ADP Co-ordinator and Project Supervisor), Mary Wilson (Community Addiction Services Team Manager) and Pauline Doherty (Addiction Support Worker) for their input, advice, guidance and support throughout the project.
The author would also like to thank staff in the Community Addiction Services for their help and support with special thanks to colleagues Craig Fisher, Val Kell and Isabelle Laird who provided extra support and a listening ear during challenging times.
Thanks should also go to Derek McCabe and the peer research team at Scottish Drugs Forum for their advice and support during the peer research training phases.
Finally thank you to the 31 people who took the time to talk to us and share their stories. We hope this report will help to address some of your issues and concerns.
It was estimated in the 2011-2012 year that East Renfrewshire had 870 problem drug users. Only approximately 30% of those individuals were in treatment meaning there were at least 600 problem drug users not accessing treatment services.
The main aim of this Needs Assessment was to determine why problem drug users in East Renfrewshire were not accessing treatment and identify barriers to treatment.
A cross sectional qualitative design using semi structured interviews was implemented to gather participants’ experiences of drug treatment services and barriers they perceived or had encountered. Privileged Access Interviewing (PAI) with additional snowball sampling was selected as the primary recruitment method but due to difficulties applying these methods alternative methods were employed.
31 participants were interviewed in total, 20 males and 11 females with an average age of 42.1, four were not in treatment, four were in shared care and 23 were receiving treatment through a community addiction team. Four main themes were identified; these were barriers to accessing services, positive aspects of the service, negative aspects of the service and the pharmacy experience. Key points from these findings are:
· Stigma is evident in all themes and participants often felt second class, looked down upon and feelings of perceived stigma when presenting at drug treatment services or community services such as the pharmacy
· Participants reported positive aspects of the service and most often in the context of having a good relationship with their support worker, often because they perceived their support worker had “a personal touch”
· Key negative aspects related to participants experiencing a lack of understanding from staff or staff being too authoritarian. They felt it difficult to express their needs or wishes and this led to feelings of inferiority and feeling “2nd class”
· Concerns around long term use of methadone was also highlighted as a concern with a perception that long term use may have a negative impact on health. As this was an older cohort participants were also concerned around the additional stigma of being a methadone user and a grandparent
· Stigma around being seen by others at both community and treatment services was evident and participants were concerned that meeting others at these places may act as a trigger to use
· Participants perceived treatment services should make more use of peers for support and advocacy purposes and that staff should be more understanding and less authoritarian, perhaps through having additional time to build up rapport
Many of the issues raised in the report are potentially issues that would need to be tackled in wider society. However an action plan will be developed by the local ADP and implemented as part of the continual improvement plan.
1.1 Definition and impact of problem drug use
There are various negative outcomes that result from problem drug use. On a personal level, an individual will be putting their health at risk, decreasing their chances of gaining and maintaining employment and be in danger of negatively affecting their relationships (Scottish Government, 2008). At a social level, communities are negatively affected making them unsafe places to live and work and cumulatively it is estimated that problem drug use costs Scotland approximately £2.6bn per year (Scottish Government, 2008: 4). Yet despite the consequences associated with problem drug use, it is estimated that 1 in 50 of the Scottish population aged between 15 and 54 could be considered a problem drug user (Scottish Government, 2008: 1).
The definition of problem drug use or dependence differs from other forms of substance use such as experimental or recreational, which typically involve using substances only occasionally and on a social basis. However it should be highlighted that these categories are not completely independent and problems may occur in any category. Similarly in terms of drug use, individuals may fit into more than one category, experiencing dependence on one drug while only experimenting with another (Petersen, 2002). Problem drug use, while having no set definition, is typically characterised by regular use of substances, signs of dependency, feelings of losing control and injecting as the main route of administration (United Nations Office on Drugs and Crime, 2011; Keubler, Hausser & Gervasoni, 2000).
In accordance with this definition of problem drug use, popular political, media and public debate often take the viewpoint that any form of drug use inevitably leads to dependency which, in turn leads to poorer life chances and crime. However Warburton, Turnbull and Hough (2005) challenge this notion by exploring experiences of individuals who used heroin frequently but in a controlled manner that did not negatively affect their personal life or relationships, were able to retain stable employment and have a “normal” life.
While the viewpoint that regular drug use may not inevitably lead to dependency is acknowledged, in many cases drug use will become problematic, having a negative impact on the individual, their families and their community. Indeed, the Scottish Government (2008: 1) highlights that problem drug use may cause the individual “medical, social, psychological, physical or legal problems because of their use”. Therefore, for the purposes of this Needs Assessment, problem drug use is seen as a serious issue where individuals should receive treatment tailored to their needs with a focus on recovery to a stable or drug free life.
1.2 Focus on East Renfrewshire
In general, Scotland’s drug problem is seen to be more problematic compared to other similar European countries and England (Scottish Government, 2008); however within Scotland estimated prevalence rates differ quite markedly.
In focusing on East Renfrewshire, while it is considered a relatively affluent area, there are points where there are significant levels of deprivation (SIMD, 2012). In terms of problem drug use, the estimated prevalence rate in East Renfrewshire in 2011 was 1.66%, which was an increase of 0.71% from 2006. While this rate was lower overall compared to Scotland as a whole, it still presented an increase that required reduction. In 2009, the East Renfrewshire Alcohol and Drug Partnership (ADP) was formed, charged with the responsibility of addressing both drug and alcohol problems in East Renfrewshire. Comprised of senior representatives from various bodies, its aim is to prevent harm caused by alcohol and drugs and also support individuals in their recovery (East Renfrewshire ADP, 2012).
In the 2011-2012 year, the ADP made progress in addressing issues in various areas including a service redesign developing care focussed on recovery in line with the Scottish Government strategy, increased service user involvement, addressing waiting times and progress in reducing drug related deaths.
Despite the progress that has been made, of the estimated 870 problem drug users in East Renfrewshire, only approximately 30% have sought treatment. This meant that there were roughly over 600 problem drug users within East Renfrewshire who were not accessing any service for their drug use.
Given the negative effects of problem drug use, combined with East Renfrewshire’s aim to prevent the harm caused by drug use and promote recovery, it was imperative to explore why this “hidden population” of problem drug users were not engaging with treatment services.
1.3 Defining a Hidden Population
The term “hidden population” refers to a population where no usable sampling frame exists (Eland-Goossensen, Van de Goor, Vollemans, Hendriks & Garretsen, 1997) and often consists of individuals who are considered to be more disadvantaged in society. This includes the homeless, criminal offenders, immigrants, illicit drug users, prostitutes and other street people (Weibel, 1990).
Difficulties arise in researching hidden populations using traditional methods such as surveys as the prevalence rate is usually low in relation to the general population. For example as Dunn, Ferri and Laranjeira (2001) note, to find just one cocaine user within the UK population, at least 400 individuals would need to be sampled. In addition to this, individuals who constitute a hidden population may be less likely to be included in traditional research due to having no fixed address and may also be unwilling to participate in research.
Given these difficulties, individuals from hidden populations are not well understood, however they may be the ones who benefit most from research efforts. For example a hidden population of illicit drug users will gain the most from prevention and treatment efforts yet if little is known about them, it is difficult to ascertain how best to provide suitable treatment options and understand their barriers to accessing treatment (Weibel, 1990).
1.4 Previous Research into Treatment Barriers
Despite the inherent difficulties in researching hidden populations, there has been a significant body of work exploring hidden populations of drug users. These studies have often provided comparisons between those in treatment and those not seeking treatment. This is to explore whether they are simply at an earlier stage of their drug using career, or if they possess different attitudinal or behavioural characteristics that differentiate them from those who seek treatment (Robson & Bruce, 1997). Other studies have descriptively explored those who do not seek treatment, to determine the experiences of those who do not seek treatment and try to determine their opinions and perceived barriers to treatment.
Findings from comparative studies have found different cohorts of out of treatment drug users. For example Robson and Bruce (1997), Hausser, Kuebler and Dubois-Arber (1999) and Kuebler, Hausser and Gervasoni (2000) found that the out of treatment cohorts most likely did not seek treatment as they hadn’t experienced as many negative effects as a result of their drug use. For example the out of treatment groups were less likely to report injecting as the main route of administration, were more likely to report being in good health, in control of their drug use and were financially independent.
Schwartz, Kelly, O’Grady, Mitchell and Brown (2011) found different features in relation to their out of treatment cohort. Their study aimed to understand the characteristics of those entering methadone treatment compared to those who were not. The treatment and non treatment group were assessed on a range of scales and the results found that in a similar manner to other studies, the out of treatment group were more likely to inject.
Unlike other studies, the out of treatment group had significantly higher scores in their levels of drug use, legal problems and issues with employment. They were also more likely to commit crime to fund their drug use and did not have support from their family or within the community to promote behaviour change.
As such, this study concluded that their out of treatment cohort did have significant problems relating to their drug use and unlike the treatment group they did not have a positive view of methadone as a means of treatment. This was further compounded by perceiving a lack of support to enable change within their social sphere, meaning despite the consequences of their drug use they didn’t feel supported to change.