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Integrated Care for drug users: Principles and practice
Appendix 3 Scottish Drugs Forum - service users' views on the planning and delivery of care - Summary
Introduction
The Scottish Drugs Forum (SDF) and its two ancillary service users' groups, Glasgow Street Intervention Group (GSIG) and Tayside Street Intervention Group (TSIG) were commissioned by the Effective Interventions Unit (EIU) to undertake a short project on the planning and delivery of care for drug users.
Aim
The aim of the project was to elicit the views and experiences of current and former drug users on the planning and delivery of their care.
Methods
Five focus groups comprising current and former service users were conducted in five localities: Dundee, Edinburgh, Inverclyde, Stirling and Shetland. This ensured representation from urban, semi-rural and rural areas of Scotland. A total of 52 respondents participated. Of these, two-thirds were male and the age range was 26-32 years (average age 28 years). The groups' discussions focused on six key themes:
Views and experiences of how their care was planned
Who had been involved in deciding what treatment and care was provided
How often users met with the people involved in planning and delivering their care
Views and experiences of having one worker as a facilitator
Whether users had a say in what treatment and care they received
Ideally, who would be involved in regular meetings about treatment and care
Key Results
There was confusion among participants about the terms 'care plan', 'care planning' and 'shared care' and what these processes were supposed to achieve.
Users identified the best things about their experiences of care planning and delivery as: not having to pay for drugs, not mixing with other drug users and having less debt.
Users identified the following as the most negative things about their care planning experiences: reducing or cutting prescription without their consent, the arbitrary way in which a good key worker was provided and the lack of trust between workers and service users.
The majority of participants thought that it would be helpful to have one person co-ordinating their care. The reasons given were that it was time saving, avoids confusion, results in better relationships between workers and service users and promotes clearer communication between agencies.
Some participants specifically mentioned the role of a relative (usually a parent) or partner in helping them access treatment.
Five professions were identified as being involved in the planning and delivery of the participants' care: doctors, key workers, generic social workers, probation and criminal justice social workers and psychiatrists.
Generally, service users met weekly with those involved in the planning and delivery of their treatment and care. However, few felt that these sessions were an opportunity to discuss changes in treatment unless there was a crisis situation.
Overall, participants felt that they had little say in getting the services that they needed. They often felt that treatment and care could only be accessed once their drug use and route of drug use (i.e. injecting) reached a certain level.
Case conferences were cited as particularly intimidating for participants. Participants felt they had no control over the proceedings, or over who should be present.
Key Conclusions
Terms commonly used by service providers such as 'care plan', 'care planning' and 'shared care' were largely unknown to participants.
The planning and delivery of care appears to be a process that happens passively to participants. This was not something that users felt they had much control over.
Most participants were in favour of having a lead worker.
From the users' perspective, treatment routes and changes in treatment provision were largely haphazard, often occurring in a reactive fashion in response to events in the users life.
Many users felt that they had to be in a crisis situation to be able to access services. In particular, some respondents indicated that they needed to be injecting to access services.
The presence or advocacy of significant others could often make the difference between getting a specific form of treatment or not.
Case conferences were a largely hostile, alienating experience for users.
Acknowledgement
SDF and EIU would like to thank all service users and recruitment sources for their assistance and help. SDF would particularly like to thank all those who participated in the focus groups.
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