Search

This compendium was produced with funding from Manchester Metropolitan University and in collaboration with colleagues in the Culturally Appropriate Alcohol Services group, formed by the Midlands-based government department, the Office of Health Improvement and Disparities (OHID). It was compiled between September 2022 and March 2023. At the time of final compilation, a number of agencies had not responded to our request for information. While the initial impetus for the compendium resulted from an alcohol-focussed forum, this compendium also includes services that support people with other drug use.

There are no effective intervention studies for people using substances who are at, or near, the end of their lives. The needs of this group of people have been consistently overlooked even within the literature that identifies marginalised groups of people in need of greater recognition in palliative and end-of-life care. The aims of the project were to: (i) determine what a new, co-produced, model of care should look like for people using substances needing palliative and end-of-life care, and (ii) establish whether the new model had the potential to improve people’s access to, and experience of, end-of-life care. This paper presents the development of the new approach to care. It was developed using participatory action research principles over a course of online workshops during the COVID-19 pandemic lockdown period in the UK. A theory of change that aims to inform future policy and practice development is presented. While the ambition of the research was stunted by the pandemic, the process of its development and dissemination of the model and its resources has continued. Response from participants highlighted the importance of this work, however, in this new field of policy and practice, preparatory work that engages a wide range of stakeholders is crucial to its success. This relationship building and topic engagement are major parts of implementation before more substantial and sustainable development goals can be met.

Focussing on end-of-life care for people who use, or have used, substances, this book explores their social and health care needs and the multiple disadvantages they have often experienced, discussing the complexities around access to care.

This chapter demonstrates the dynamic, non-linear, and complex trajectories involved in the journey towards long-term recovery from substance misuse. It begins by discussing some of the challenges in identifying and analysing long-term recovery. As has become evident, objectifying recovery as an outcome variable hinders us from identifying the processes of long-term recovery, a phenomenon in which the lines between wellness (that is, recovery) and pathology (that is, substance misuse) become blurry. The chapter then presents two real-life examples of people with lived experience of long-term recovery, offering clinical reflections based on practice experience in the UK. Finally, it offers recommendations for future research and a way forward that is more sensitive to the needs of people in long-term recovery.

About this guide Children living with parents who use substances are a group of children who are overlooked in legislation, policy and practice. This guide draws on research that puts children’s voices front and centre. Findings from safeguarding practice reviews consistently show clear system failures and a lack of inter-agency communication where parental substance use is identified as the primary factor in the significant injury or death of a child. Through attention to the child’s narrative, this guide will support social workers in their assessment of risk and the protective factors needed by children to buffer against the negative impact of parental substance use.

This paper draws on data from one strand of a six-strand, exploratory study on end of life care for adults using substances (AUS). It presents data from the key informant (KI) strand of the study that aimed to identify models of practice in the UK. Participant recruitment was purposive and used snowball sampling to recruit KIs from a range of health and social care, policy and practice backgrounds. Data were collected in 2016-2017 from 20 KIs using a semi-structured interview approach. The data were analysed using template analysis (King, 2012). This paper focusses on two of seven resulting themes, namely ‘Definitions and perceptions of key terms’ in end of life care and substance use sectors, and ‘Service commissioning and delivery’ The KIs demonstrated dedicated individual practice, but were critical of the systemic failure to provide adequate direction and resources to support people using substances at the end of their lives.

This discussion article examines narrative positioning related to pain management for people who use substances at the end of life. We explore how dominant narrative genres associated with biomedicine, such as 'restitution' and narratives common within the context of drug services such as 'recovery' can hinder effective pain management within this population. We argue that these discourses can marginalise the ethical self-identity of patients who use substances at the end of life. It can also trouble health and social care professionals in supporting patients and generating counter-narratives that challenge those often associated with substance use. Stigma is a common experience for this population with stereotyping as 'junkies' and associated with criminality. They are positioned as drug-seeking, and this requires more surveillance at the end of life when opioid therapy is potentially more available and authorised. This can make it challenging to generate 'companion' stories that are positive and maintain moral adequacy. Dominant biomedical narrative genres often prevent the recognition of the fractured stories that people using substances can often present with. This can lead to narrative silencing and to the under treatment of pain. The person's self-identity is invested in narratives of recovery, and opioid use symbolises their addicted past because for practitioners, this population is at clinical risk with the potential for drug seeking behaviours. Whilst not requiring formal ethical review this discussion paper was constructed in accordance with good scientific practice with the work of other researchers respected and cited appropriately.

Substance use services for people who are at, or near, the end of their lives are lacking. In an ageing population worldwide, where people are living longer with manifold social and health care needs (1), substance use is increasingly among the activities that people will die with, and of. Substance use services must be ready, willing and able to respond

This discussion article examines narrative positioning related to pain management for people who use substances at the end of life. We explore how dominant narrative genres associated with biomedicine, such as 'restitution' and narratives common within the context of drug services such as 'recovery' can hinder effective pain management within this population. We argue that these discourses can marginalise the ethical self-identity of patients who use substances at the end of life. It can also trouble health and social care professionals in supporting patients and generating counter-narratives that challenge those often associated with substance use. Stigma is a common experience for this population with stereotyping as 'junkies' and associated with criminality. They are positioned as drug-seeking, and this requires more surveillance at the end of life when opioid therapy is potentially more available and authorised. This can make it challenging to generate 'companion' stories that are positive and maintain moral adequacy. Dominant biomedical narrative genres often prevent the recognition of the fractured stories that people using substances can often present with. This can lead to narrative silencing and to the under treatment of pain. The person's self-identity is invested in narratives of recovery, and opioid use symbolises their addicted past because for practitioners, this population is at clinical risk with the potential for drug seeking behaviours. Whilst not requiring formal ethical review this discussion paper was constructed in accordance with good scientific practice with the work of other researchers respected and cited appropriately.