Harm Reduction in Edinburgh A Health Needs Assessment with People Who Inject Drugs 2017 Published August 2017

Authors: Amir Kirolos Speciality Public Health Registrar, NHS Lothian Claire Glen Senior Health Promotion Specialist, NHS Lothian Duncan McCormick Consultant in Public Health Medicine, NHS Lothian

Co-Authors: Andrew O Donnell Trainer in Substance Misuse and Harm Reduction Naloxone Lead, NHS Lothian David Williams Officer, Edinburgh Alcohol and Drug partnership James Shanley Harm Reduction Services Manager, NHS Lothian Peter Fairbrother Drug Related Deaths Review Coordinator, NHS Lothian Sheila Wilson Senior Health Policy Officer, NHS Lothian

Steering Group Members: Alan Laughland Pathways Manager/Coordinator, Edinburgh Choose Life Amir Kirolos Speciality Public Health Registrar, NHS Lothian Carmen McShane Service Manager, NHS Lothian Chris Miller Lead Pharmacist for Substance Misuse and Prison Services, NHS Lothian Claire Glen Senior Health Promotion Specialist, NHS Lothian David Ewart Primary Care Facilitator, NHS Lothian David Williams Officer, Edinburgh Alcohol and Drug Partnership Duncan McCormick Consultant in Public Health Medicine, NHS Lothian Duncan Stewart Consultant Psychiatrist, NHS Lothian Ewen Stewart Lothian Viral Hepatitis Managed Care Network Clinical Lead, NHS Lothian Hilda Stiven Senior Health Policy Officer, NHS Lothian James Shanley Harm Reduction Services Manager, NHS Lothian Michael Kehoe Consultant Psychiatrist, NHS Lothian Neil Wilson Workforce Planning Manager, NHS Lothian Nicholas Smith (Chair) Manager, Edinburgh Alcohol and Drug Partnership Patricia Burns Temporary Clinical Services Development Manager, NHS Lothian Paul Novak Community Psychiatric Nurse, Edinburgh Access Practice Phillip Heaton Team Leader, ‘Change, Grow, Live’, Edinburgh Rachel Petrie Consultant Psychiatrist, NHS Lothian Rebecca Lawrence Consultant Psychiatrist, NHS Lothian Roy Robertson Professor of Addiction Medicine, University of Edinburgh

1 Contents

Executive Summary 4 Recommendations 7 Abbreviations 12 Tables and Figures 13/14 1.0 Introduction 15 2.0 Aim, Scope and Objectives 18 3.0 Methods 19 4.0 Current Service Configuration 25 5.0 Opioid Substitution Therapy 35 6.0 Injecting Equipment Provision 44 7.0 Blood-borne Virus Testing, Care and Treatment 53 8.0 Take Home Naloxone 62 9.0 Accident & Emergency 67 10.0 Criminal Justice System 72 11.0 Social Services 79 12.0 Drug-related Deaths and Non-Fatal Overdose 82 13.0 Views of People Who Use the Services 89 14.0 Views of People Who Provide the Services 100 15.0 Conclusions and Recommendations 105 16.0 References 115

Appendix 1: Staff Survey Questionnaire 118 Appendix 2: Health Needs Assessment Conversation Café 129 Appendix 3: Harm Reduction Provision by Locality 136 Appendix 4: Drug-related Death Definition 141

2 Acknowledgements

The authors would like to extend our thanks to the following people for their much appreciated contributions to this health needs assessment

• All service users who took part in focus groups and interviews and staff involved with harm reduction services who responded to our staff survey • Andy McAuley, Norah Palmateer and Allan McLeod (Health Protection Scotland / Glasgow Caledonian University) for the provision of expert advice and the analysis of stratified data for NHS Lothian collected from the Needle Exchange Surveillance Initiative 2015/16 • Mette Tranter (Lothian Analytical Services, NHS Lothian) for providing mapping assistance • Gina McCallister (NHS Lothian) for providing data on hepatitis C testing • Chris Cooper (Analyst, Primary Care Facilitation Team) for providing data from the drug misuse National Enhanced Service • Scottish Ambulance Service for providing data on naloxone and overdose incidents • Tracey Cochrane, Jill Smith, Dave Carson, Sabina McDonald, Chris Stothart for assisting with the Conversation Cafe consultation event • Gemma Gallacher (NHS Lothian) for assistance in compiling and formatting the final report • Elizabeth Balfour (Lothian Analytic Services, NHS Lothian) for providing assistance with analysis of data from TRAK, NEO and ADASTRA data sources • Lee Barnsdale (Information Services Division, Scotland) for providing SMR25a data • Fraser Walker (University of Edinburgh) for allowing use of findings from an undergraduate project using interviews with homeless people who inject drugs in Edinburgh • Catherine Scott (NHS Lothian) for retrieving information on hepatitis C referral and treatment rates from the Royal Infirmary of Edinburgh Database • Alison McCallum (NHS Lothian, Director of Public Health & Health Policy) for support and feedback throughout the health needs assessment

Correspondence

NHS Lothian Public Health & Health Policy

Duncan McCormick [email protected]

Edinburgh Alcohol & Drug Partnership

Nicholas Smith [email protected]

Edinburgh Harm Reduction Team

James Shanley [email protected]

3 Executive Summary

The health needs assessment collected data from service users, service providers and epidemiological sources. The findings were well aligned and this has made it possible to identify the unmet harm reduction needs of people who inject drugs in Edinburgh.

1.0 Conclusions A stronger systems approach to care: There is a degree of service integration from the service perspective, but there are not common standards for harm reduction that are understood and consistently implemented across the whole patient journey. Therefore the system as a whole does not provide the full range of holistic, patient centred care or the quality and continuity that people need.

More intelligence led services: The services are often not intelligence led because of limitations in data quality, lack of data linkage between services, no agreed performance indicators across the system and no shared approach for monitoring and evaluation.

Making the best of all available assets and resources: There have been severe cuts to addiction services in the last year and this has a major impact on capacity. However, it is important to invest in and make best use of the many well trained and experienced staff, the infrastructure and effective outreach systems that already exist and the people with lived experience, who can provide crucial psychosocial support.

2.0 Key messages

2.1 Improve access and retention for opioid substitution therapy In 2016, the opioid substitution therapy programme in Edinburgh reached approximately 3440 (52%) of an estimated 6600 potential beneficiaries. This is higher than the national average. However, there are long waits and low retention, up to 80% of treatment is low intensity as provided by GPs, most services do not routinely provide other harm reduction measures and there is a lack of routinely available data for monitoring and evaluation. Services need to agree common standards, conduct a pathway audit against the standards, conduct small tests of change where needed and establish data systems to monitor progress and quality.

2.2 Provide harm reduction as part of all service contacts In 2015-16, injecting equipment was provided to approximately 1,319 regular users in Edinburgh. However, the full range of harm reduction interventions are not opportunistically available as part of all ‘drop in’ or by appointment consultations. For example, up to 46% of users may not be receiving enough injecting equipment and naloxone is not adequately provided through key settings such as A&E, general practice and pharmacies; despite up to 80% of addictions treatment being provided by GPs, 83% of regular users accessing pharmacies for basic injecting equipment services, and a monthly average of 102 hospital admissions via A&E for psychoactive substance use. So there are many missed opportunities. We must

4 extend the reach of harm reduction interventions to include generic hospital, primary care and social services, and also promote harm reduction as part of the core intervention for addictions services.

2.3 Reduce missed opportunities for hepatitis C testing, care and treatment Data from the Needle Exchange Surveillance Initiative 2015-16 survey reports the hepatitis C antibody prevalence of people attending injecting equipment provision services in Edinburgh as 48%. This is a 7% rise from 41% in 2013-14. Hepatitis C testing for eligible individuals on specialist drug treatment can improve: 45% of eligible individuals in specialist services, and 58% under the general practice drug misuse National Enhanced Service were untested in the year since last test in 2015/16. NHS Lothian exceeded treatment targets for 2016/17 and has high rates of treatment success. However, in 2015-16, 51% of current or ex- injectors referred for hepatitis C treatment at the Royal Infirmary of Edinburgh and its outreach clinics, did not attend their first appointment and 57% of those who did attend, did not commence treatment. The attrition is lower for people referred for treatment at the Edinburgh Access Practice. We need to improve hospital/community outreach through targeted case finding, trial additional general practice based hepatitis C treatment sites, ensure a greater role for locality teams in blood-borne virus testing and treatment support, and further develop data systems to monitor progress and quality.

2.4 Improve support for general health and wellbeing There is an ageing population of people who inject drugs that has much higher rates of comorbidities than people of the same age in the general population; 10 times more admissions for mental health issues, six time more for chronic respiratory disease. In 2015/16, 64% of drug related deaths had a co-morbidity (60% mental health, 54% alcohol misuse). Patients and staff identified high levels of unmet need around mental health, often linked with traumatic events, and specialist clinics are seeing increasing rates of advanced skin and soft tissue complication of injections. Current specialist addictions services are not configured to provide care for comorbidities, and other services that come into contact with problem drug users are not usually configured for provision or referral to addictions care. We need to improve referral pathways and hospital in reach for harm reduction, improve the skill mix in localities, develop a system wide approach for chronic and enduring mental health care and support interventions that reduce social isolation.

2.5 Strengthen services for vulnerable groups There are high numbers of people who inject drugs that are particularly vulnerable; 15% have been released from prison in the previous six months, 26% of drug-related deaths have been released from police custody in the previous six months, 30% of regular service users are homeless and people aged over 35 years are at greater risk of severe comorbidities, social isolation and drug related death. All services need to be configured and staffed to provide appropriate support. The needs of people who are not engaged with services need further investigation. These include women, street injectors, people recently discharged from the criminal justice system,

5 homeless people, people with low literacy/numeracy and the children, families and carers of people who inject drugs.

2.6 Ensure quality improvement across all services Across the whole system that provides care, there are no agreed common standards for harm reduction and current approaches to quality improvement are not coordinated. Data collection is variable across the city and across different databases. There are no clear links between databases in settings such as police custody, social care, third sector or NHS addictions and this means that there are many missed opportunities for shared care. There is insufficient data on key services such as opioid substitution therapy to guide development, monitoring and evaluation of services, and feedback of intelligence to front line workers is limited. We need to establish common service standards, an integrated approach to quality improvement, systems for data sharing and dissemination, and a strategy for workforce development.

6 Recommendations

Recommendation 1: Improve access and retention for opioid substitution therapy Services need to agree common standards, conduct a pathway audit against the standards, conduct small tests of change where needed and establish data systems to monitor progress and quality.

Actions 1.1 An addictions consultant should lead a multidisciplinary group to conduct a pathway audit of opioid substitution therapy (OST) services against agreed standards and make recommendations for service improvement such as: non medical prescribing, greater choice of treatment (e.g. buprenorphine), discharge polices, better managing critical transition points and extended provision of high intensity/low threshold OST treatment for very high risk patients across Lothian.

1.2 Recovery hub teams, with support from the ADP Support Team, NHS Lothian Public Health and the local addictions consultant should identify areas where small tests of change are needed to achieve agreed standards for OST services; e.g. drug testing by third sector colleagues to reduce the number of visits before starting OST.

1.3 The Primary Care Facilitation Team should co-ordinate with the Edinburgh Alcohol and Drugs Partnership to explore options for non-medical prescribing in primary care, learning lessons from current practice in Edinburgh Access Practice and pilots in Boroughloch and Mill Lane Surgeries.

Recommendation 2: Provide harm reduction as part of all service contacts There is a need to extend the reach of harm reduction interventions to include generic hospital, primary care and social services, and also promote harm reduction as part of the core intervention for addictions services.

Actions 2.1 The harm reduction team should work with community pharmacy and third sector to provide enhanced harm reduction services in pharmacies: a) Use the lessons learned from the 2017 pilot of ‘in-reach’ provision of enhanced services in community pharmacies. b) Explore options to enhance existing pharmacist contacts and where necessary contracts. Many pharmacists already provide services for drug users including dispensing of hepatitis C (HCV) drugs and OST, plus the minor ailments and smoking cessation services. Options range from provision of harm reduction information packs and online training modules to increase awareness, to contract changes that include distribution of IEP ‘one hit kits’,

7 provision of take home naloxone (THN), hepatitis B vaccination and blood- borne virus (BBV) testing.

2.2 The Primary Care Facilitation Team should work with the harm reduction team, recovery hub teams, drug misuse National Enhanced Service (NES) GPs and GP cluster quality improvement leads to make sure that people cared for under the drug misuse NES can benefit from additional harm reduction services in the general practice: a) Conduct a trial of opportunistic IEP ‘one hit kits’. b) Promote provision of take home naloxone. c) Promote annual BBV testing for people who inject drugs.

2.3 Recovery hub teams should develop a strategy to provide injecting equipment, THN, BBV testing and hepatitis B vaccination through existing contacts with clients. Many clients are known to continue injecting while on OST and IEP/THN distribution by specialist addictions staff already takes place in NHS Lothian.

2.4 Recovery hub teams and the harm reduction team should work with secondary care to establish referral pathways for harm reduction interventions for people seen in secondary care. This would include input from a designated drugs liaison person to work between A&E/in patient wards and the harm reduction team/recovery hubs.

2.5 The Harm Reduction Team should: a) Work with localities to implement small tests of change and provide oversight for wider roll out; including promotion of injecting equipment provision, take- home naloxone, BBV testing and wound care in all care settings. b) Strengthen links and services with police custody and prison through care. c) Lead development of a ‘dashboard’ for Needle Exchange Online (NEO) data. d) Work with secondary care A&E and in patient wards, to ensure provision of THN and hepatitis B vaccination to people who inject drugs.

Recommendation 3: Reduce missed opportunities for hepatitis C testing and treatment There is a need to improve hospital/community outreach through targeted case finding, trial additional general practice based hepatitis C treatment sites, ensure a greater role for locality teams in blood-borne virus testing and treatment support, and further develop data systems to monitor progress and quality.

Actions 3.1 The Lothian Viral Hepatitis Managed Care Network should: a) Establish a ‘HCV dashboard’ to monitor service delivery, including data from NHS Lothian Virology, SMR25a, the drug misuse National Enhanced Service and clinical data bases.

8 b) Recruit an individual to work with hospital and community services to provide additional outreach that can identify and follow up HCV positive individuals. c) Work with Muirhouse Medical Practice to establish an additional primary care site for HCV treatment. d) Work with recovery hubs to establish an accelerated plan with targets for the transfer of community testing from the BBV team to recovery hub teams.

Recommendation 4: Improve support for general health and wellbeing There is a need to improve referral pathways and hospital in reach for harm reduction, improve the skill mix in localities, develop a system wide approach for chronic and enduring mental health care and support interventions that reduce social isolation.

Actions 4.1 The recovery hub teams, supported by NHS Lothian Public Health should work with secondary care and other providers to establish clear two way referral pathways; e.g. for respiratory disease, smoking cessation, oral health, and sexual health (e.g. ‘priority access cards’ for sexual and reproductive services).

4.2 Community pharmacists and recovery hubs should promote pharmacy services including the minor ailments service, chronic medication service and pharmacy smoking cessation service.

4.3 The harm reduction team should work with recovery hubs to pilot locality based wound care with clear referral pathways to the specialist wound clinic at the Spittal Street Centre.

4.4 The Edinburgh Alcohol and Drug Partnership should develop and strengthen approaches that reduce social isolation and promote social inclusion. This should include support from people with lived experience working within the multidisciplinary team.

4.5 An addictions consultant and a mental health consultant should lead a multidisciplinary group to explore ways to address the unmet need for chronic and enduring mental health care. This may require a system wide approach to free up capacity within the addictions team and will require liaison between A&E, in patient wards, liaison psychiatry and addictions psychiatry.

Recommendation 5: Strengthen services for vulnerable groups The needs of people who are not engaged with services require further investigation so that services can be configured appropriately. Vulnerable groups include: women, street injectors, people recently discharged from the criminal justice system, homeless people, young people, individuals with significant risk factors for drug- related deaths (e.g. non-fatal overdose), the children, families and carers of people

9 who inject drugs, transgender people, men who have sex with men, people with low literacy/numeracy, people who work and people from diverse ethnic and linguistic backgrounds.

Actions 5.1 The Lothian Drug-related Deaths (DRD) lead should work with the Lothian steering group to: a) Identify systematic ways to identify and intervene with people at risk of DRD. b) Develop interventions according to need e.g. ‘Keep Well’ type interventions for older people who inject drugs with comorbidities and poly pharmacy, outreach to engage younger people who experienced non-fatal overdose and interventions to address social isolation.

5.2 The harm reduction team should conduct a pilot of a dedicated Image and Performance Enhancing Drugs clinic at Spittal Street Centre.

5.3 Edinburgh Alcohol and Drugs Partnerships should work with colleagues in the City of Edinburgh Council to: a) Modify the homeless database to enable recording of drug use status. b) Establish a protocol with community and hospital partners to allow continuity of care across health and social care services.

5.4 The harm reduction team and NHS Lothian Public Health should lead an investigation into the needs of vulnerable groups and explore options for targeting services, such as extended use of the ‘NEON’ outreach bus.

5.5 The harm reduction team, NHS Lothian Public Health and health promotion should liaise with the prisons and third sector to: a) Provide injecting equipment provision on prison release, e.g. using the IEP ‘one hit kits’ as part of discharge packs. b) Explore the experiences of recently liberated prisoners and their needs in relation to harm reduction, especially women, young people and homeless people. c) Identify individuals with risk factors for drug-related death and provide additional support for them to engage with treatment and harm reduction services. d) Investigate how admissions to the prison mental health and addictions team can be captured on the Lothian drug and alcohol dashboard.

5.6 The harm reduction team should liaise with police custody and the third sector to identify ways to provide the full range of harm reduction services for those attending the police custody suite including: IEP ‘one hit kits’, BBV testing and community link workers (especially for younger detainees).

10 5.7 Change Grow Live should work with police custody to identify individuals with risk factors for drug-related death and provide additional support for them to engage with treatment and harm reduction services.

5.8 The Edinburgh Alcohol and Drugs Partnership should: a) Work with Community Justice to progress the provision of the arrest referral service within the custody suite. b) Regularly review routine data related to detainees with problematic drug use to identify and respond to changing patterns or emerging needs.

Recommendation 6: Ensure quality improvement across all services There is a need to establish common service standards, an integrated approach to quality improvement, systems for data sharing and dissemination, and a strategy for workforce development.

Actions 6.1 Edinburgh Alcohol and Drugs Partnership, recovery hub teams, Lothian Drug- Related Deaths Steering Group and NHS Lothian Public Health should convene a system wide multiagency group to: a) Agree local service standards and key performance indicators. b) Agree a quality improvement approach to recovery and harm reduction. c) Oversee the establishment of data systems (e.g. dashboards for OST, IEP, HCV) to monitor and evaluate service performance and quality. d) Ensure that best practice and relevant data is shared across the system. e) Ensure that as this work progresses it should become inclusive of all Lothian as appropriate.

6.2 The Edinburgh Alcohol and Drug Partnership should work with health promotion, recovery hubs, the harm reduction team and other to develop and implement a strategy to increase the skill mix in hubs. This should include: a) A skill based workforce audit to look at existing assets and gaps. b) Consideration of options to provide protected learning time. c) Work with the Scottish Prison Service and NHS Prison healthcare team to identify and support workforce development needs. d) The elements identified above such as: ‘keep well’ type approaches to chronic disease management, provision of THN, BBV testing and injecting equipment, low threshold methadone prescribing, wound care, sexual health, respiratory assessment, smoking cessation and trauma informed practice.

11 Abbreviations: Accident & Emergency (A&E) Adolescent Substance Use Service (ASUS) Alcohol and Drugs Partnerships (ADPs) Blood-Borne Virus (BBV) Business Improvement District (BID) Change, Grow, Live (CGL) City of Edinburgh Council (CEC) Community Health Index (CHI) Drug related deaths (DRD) Drug Testing and Treatment Orders (DTTO) Dry blood spot testing (DBST) Edinburgh Access Practice (EAP) Edinburgh Alcohol & Drug Partnership (EADP) Edinburgh Common Housing Outcomes (ECHO) Edinburgh and Midlothian Offender Recovery Service (EMORS) General Practice (GP) General Practitioner with Special Interest (GPwSI) Hepatitis C virus (HCV) Hepatitis C antibody (HCV Ab) Hepatitis C antigen (HCV Ag) Her Majesty’s Prison Edinburgh (HMP Edinburgh) Injecting Equipment Provision (IEP) Image & performance enhancing drugs (IPED) Integration Joint Board (IJB) Information Services Division (ISD) Local Enhanced Service (LES) Low Threshold Methadone Programme (LTMP) Multi-agency through care service (MATS) National Enhanced Service (NES) Needle Exchange Surveillance Initiative (NESI) Needle Exchange Online (database) (NEO) Non medical prescribing (NMP) Novel Psychoactive Substances (NPS) Opioid substitution therapy (OST) People Who Inject Drugs (PWID) Point of care testing (POCT) Polymerase chain reaction (PCR) Primary Care Facilitation Team (PCFT) Royal Infirmary of Edinburgh (RIE) Scottish Ambulance Service (SAS) Scottish Prison Service (SPS) Soft skin & tissue infections (SSTI) Scottish Morbidity Record (SMR25a) Substance Misuse Directorate (SMD) Take Home Naloxone (THN) Western General Hospital (WGH) World Health Organisation (WHO) National Records Scotland (NRS)

12 Tables presented in report: Table 3.1: Number of people who currently inject drugs interviewed in different settings Table 4.1: IEP service classification Table 4.2: Potential barriers to access of OST Table 5.1: Number of people in specialist drug treatment, Edinburgh 2015-16 Table 5.2: Number of people in Edinburgh receiving treatment for problem drug use by locality Table 5.3: Strengths and challenges: access to OST though locality teams (hubs) Table 5.4: Strengths and challenges: Low Threshold Methadone Programme Table 5.5: Strengths and challenges: Edinburgh Access Practice Table 5.6: Strengths and challenges: Drug Treatment and Testing Order Table 5.7: Strengths and challenges: Drug Misuse National Enhanced Service Table 6.1: Number of clients regularly accessing IEP services in Edinburgh Table 6.2: Number of clients accessing different types of IEP services Table 6.3: Percentage of needles dispensed compared to reported demand in NESI 2015-16 respondents (calculated as reported number of needles received / number of times injected) Table 7.1: Prevalence rates of hepatitis C antibody positive in persons who inject drugs attending IEP services in Lothian based on NESI survey 2015-16 Table 7.2: Location of last HCV test based on NESI 2015-16 Table 7.3: Location of testing for 93 new patients registered with drug misuse NES scheme in Lothian based on laboratory data Table 7.4: Number of patients commencing HCV treatment in Lothian compared to Scottish Government target Table 7.5: Numbers of people who inject drugs referred for HCV, attending clinic and treated for HCV at Royal Infirmary of Edinburgh (RIE) and Edinburgh Access Practice (EAP) 1st March 2014 until 31st December 2016. Table 8.1: Take home naloxone supply Table 8.2: Naloxone supplied by reason for issue, City of Edinburgh FY 2016/17 Table 8.3: Take home naloxone issued City of Edinburgh locality Table 9.1: Population pyramid for individuals in the cohort – by age group and sex Table 9.2: Total admissions for each diagnosis (contains multiple admission counts for admissions with several different diagnoses) Table 10.1: Self-reported data by the prisoner in relation to drug use from males on admission and females transferred into HMP Edinburgh between 1st January 2016- 31st December 2016 from VISION Table 10.2: Number of prisoners receiving OST at HMP Edinburgh Table 10.3: Recorded drug use by substance type, of police custody detainees associated with drug use based on ADASTRA from August 2015 to July 2016 Table 12.1: Drug-related deaths eligible for case review by council area in NHS Lothian, 2016 Table 12.2: Drug-related deaths in Lothian, 2016, by age Table 12.3: Substances implicated in death Table 14.1: Numbers and characteristics of staff fully completing the staff consultation survey Table 14.2: Additional Harm Reduction Interventions needed

13 Figures presented in report: Figure 1.1: Conceptual framework of the journey people may experience as they move through drug treatment services Figure 4.1: Map of City of Edinburgh localities Figure 4.2: Location of harm reduction services in Edinburgh Figure 4.3: Young People’s Substance Use Service tiered service provision Figure 5.1: Approximate OST caseloads of different services in Edinburgh Figure 5.2 Age group and gender of drug misuse National Enhanced Service (NES) patients in Edinburgh North East 2016 Figure 5.3: Standard pathway from presentation to titration onto OST via hubs teams Figure 5.4: Number of drug misuse National Enhanced Service (NES) patients at the Edinburgh Access Practice with one appointment in the previous 6 months Figure 6.1: Age and gender of ‘regular attendees’ at IEP services Figure 6.2: ‘Regular attendees’ at IEP services by housing status based on NEO. Figure 6.3: Age and gender of those using Image and Performance enhancing drugs with >=2 transactions based on NEO Figure 6.4: Number of needles provided compared to reported injecting frequency based on NEO (mean average= - 32 needles per year per client) Figure 6.5: Number of ‘regular attendees’ by postcode of residence based on NEO Figure 6.6: Location and number of needle discards in Edinburgh (August 2015 – July 2016) Figure 7.1: Data linkage between SMR25a CHI numbers and NHS Lothian laboratory testing data Figure 7.2: Data linkage between new drug misuse NES registrant CHI numbers and NHS Lothian laboratory testing data Figure 7.3: National Hepatitis C (HCV) Care Cascade Figure 7.4: Piot-Fransen Model of attrition rates for HCV referral and treatment in a cohort of 208 current and ex- injecting drug users in Edinburgh as coded on Royal Infirmary of Edinburgh database Figure 8.1: Monthly prescribing of naloxone for Lothian GP practices in the drug misuse National Enhanced Service (NES) from January 2016 to February 2017 (excluding stock orders) Figure 8.2: Map of patients who received naloxone between April 2014 and September 2016 based on postcode district Figure 9.1: Population pyramid for individuals in the cohort – by age group and sex Figure 9.2: Total admissions for each diagnosis (contains multiple admission counts for admissions with several different diagnoses) Figure 9.3: Map of patients from TRAK data with inpatient admission through A&E in relation to psychoactive substance use from 1st August 2015 to 31st Jul 2016 Figure 10.1: Age and gender of police custody detainees associated with drug use between 1st August 2015 and 31st July 2016 based on ADASTRA Excludes those with no recorded CHI number (13% of cohort) Figure 12.1: Map of drug-related deaths from 2012-2016 in Lothian based on postcode of residence Figure 12.2: Drug-related deaths in Lothian, 2016, by age & gender Figure 14.1: Service provider ratings of current harm reduction services based on 133 responses to the question ‘How would you rate the availability of the following interventions for your clients?’

14

1.0 Introduction

Between 1982 and 1984, Edinburgh experienced an epidemic of HIV among young people injecting heroin in the city. This prompted an innovative shift in policy in Scotland towards harm reduction services that provided opioid replacement and needle exchange, plus, population HIV testing once technology became available in 1986. Subsequently, there was a gradual decrease in new cases of HIV among people who inject drugs in Edinburgh and the 2015-16 Needle Exchange Surveillance Initiative (NESI) indicated that of 471 individuals tested for HIV in Lothian, three were positive (0.6% prevalence) [1].

However, over 2013-15 the City of Edinburgh experienced a large rise in people injecting novel psychoactive substances (NPS) and from April 2013 to December 2015, 418 individuals were admitted to Lothian hospitals with a diagnosis relating to NPS use [2]. Those involved frequently demonstrated chaotic and unsafe injecting practice and were vulnerable to overdose, transmission of blood borne viruses (BBVs) and severe soft tissue infections. The multiagency response across the city included increased provision of information to drug users and health and social care staff, injecting equipment provision (IEP), blood-borne virus (BBV) testing & treatment, as well as a local ban which was followed by national legislative changes that eventually restricted the availability of NPS [3].

Since 2015, addictions services report that many individuals have returned to the injecting of opiates and stimulants, such as crack cocaine, and concerns remain over continued risk behaviour among people who inject drugs in the city. This is particularly worrying in the context of the increasing prevalence of hepatitis C virus (HCV) among people who inject drugs in Edinburgh (a rise from 41% to 48% of drug users with positive HCV antibody between 2013-14 and 2015-16), the re-emergence of HIV infection among people who inject drugs in Glasgow (47 new cases in 2015) and the continuing rise in drug-related deaths across Scotland (a rise from 485 deaths in 2010 to 706 deaths in 2015) [1].

At the end of 2015, the Scottish Government announced a 23% reduction in funds for Alcohol and Drugs Partnerships (ADPs). This together with the above noted risks prompted the Edinburgh Alcohol and Drugs Partnership to commission a review of the harm reduction needs of people who inject drugs in Edinburgh. The needs assessment was governed by a multiagency steering group convened on 12th September 2016, and the day to day work was conducted by a core group, in partnership with NHS Lothian virology lab, Lothian Analytical Services, the Primary Care Facilitation Team and Health Protection Scotland.

15 1.1 Harm Reduction Harm reduction services for people who inject drugs aim to reduce the morbidity and mortality caused by a wide spectrum of health and social issues. There is a good understanding of what interventions are effective and these include opioid substitution therapy (OST), IEP, take home naloxone (THN), immunisation for hepatitis A and B viruses, testing care & treatment for BBVs and social support such as housing, employment and welfare. National guidance recommends that these interventions are provided as a core part of addictions services and that they are also available directly or by referral through other health and social services that care for people with problem drug use such as police custody, accident & emergency and housing services [4,5].

In 2008, the Scottish Government published ‘The Road to Recovery’ which emphasises recovery as the primary aim of drug and alcohol treatment services, whilst noting that harm reduction approaches are complementary [6]. However, recovery journeys are not straightforward and even those who are on OST will continue to be at risk from premature death, acquisition of blood borne viruses, severe skin and soft tissue infections, prescription poly pharmacy, incarceration, comorbidities, homelessness and social isolation. For example, NESI 2015-16 shows that in Lothian 58% of current injectors had received methadone in the last six months, 48% were HCV antibody positive and 22% had a skin or soft tissue infection in the last year. As a result, many people come into repeated contact with a variety of services including Accident & Emergency, police custody, prison, pharmacies, primary care and homeless services as well as drug treatment services. This means that throughout the road to recovery there are multiple opportunities to offer additional harm reduction interventions as a core part of care (Figure 1.1).

The recent emergence of NPS and re emergence of HIV in Glasgow both indicate that services need to be regularly refreshed so that they can continue to meet the needs of people who inject drugs. This needs assessment provides local information and recommendations that contribute to that aim.

16 Figure 1.1: Conceptual framework of the journey people may experience as they move through drug treatment services: the aim of harm reduction is to modify the trajectory so that there are improved outcomes

Harm Reduction Interventions

IEP BBV Testing THN BBV Treatment

Primary Outcomes e.g. care Premature death 3rd Specialist OST Disability Sector Addictions Co-morbidity Triage Hubs Incarceration Recovery Maintenance.....

A&E Police Custody Primary Care Prison Homeless services

Wider settings for service delivery

17 2.0 Aim, Scope and Objectives

2.1 Aim To assess the health needs of people who inject drugs in the city of Edinburgh and make recommendations for the planning and delivery of harm reduction services.

2.2 Scope The assessment covers the harm reduction needs of people in the City of Edinburgh who inject heroin, cocaine, other psychoactive substances and image & performance enhancing drugs.

This assessment did not have the capacity or remit to conduct a detailed review of services such as specialist opioid substitution therapy care, social care, accident & emergency, the needs of specific groups such as women or the needs of people in HMP Edinburgh. Where there is insufficient evidence to make detailed recommendations, general recommendations for further work are made on the basis of the evidence available.

Harm reduction interventions reviewed Opioid substitution therapy; injecting equipment provision; take home naloxone; blood borne virus testing, care & treatment; and social care.

Settings reviewed Specialist and primary care addictions services; general, enhanced and specialist injecting equipment provision services; accident and emergency; police custody; HMP Edinburgh.

2.3 Specific Objectives In each setting and for each intervention: 1. Collate existing data on: a. the characteristics and needs of the population b. the current service provision – what and where services are provided, how they are provided and how they are utilised.

2. Consult service users and providers.

3. Make recommendations for knowledge and service development.

18 3.0 Methods

The approach considers need as an individual’s capacity to benefit from an intervention or services and takes account of Bradshaw’s typology which classifies needs into felt, expressed, normative and comparative [7]. The standard practice of using epidemiological, comparative and corporate approaches was adopted for this needs assessment [8].

3.1 Epidemiological Routine data on the characteristics of people who inject drugs in Edinburgh, and the services they use, was collected from local and national data sources. Several challenges were encountered with the extraction, analysis, completeness and reliability of a number of routine data sources used. Relevant chapters include a more detailed discussion of the limitations of data sources in relation to the interpretation of results.

Data sources

Needle Exchange Online (NEO) Database NEO is used by Injecting Equipment Provision (IEP) services across Edinburgh. Data was analysed for the City of Edinburgh from August 1st 2015 to July 31st 2016. For the purposes of the assessment it was assumed that people using IEP services are current injectors, although it is recognised that in some instances people may be non injectors but collecting injecting equipment for others. People attending IEP services are given a unique identifying number which they can reuse at different sites and NEO records information on demographics, injecting behaviour and equipment dispensed. One of the challenges is duplication of ‘unique’ identifiers and analyses were conducted mainly for numbers that appeared five or more times (classified as ‘regular attendees’) and those appearing 50 or more times (classified as ‘frequent attendees’).

Needle Exchange Surveillance Initiative (NESI) 2015-16 NESI is a cross-sectional survey of people who inject drugs [1]. Of the 475 people surveyed in NHS Lothian, 87% were City of Edinburgh IEP users and for subsequent analyses it was assumed that the findings for the whole cohort were representative of Edinburgh. Health Protection Scotland conducted sub analysis for respondents who reported: (i) having been in prison in the last 6 months (70 individuals); (ii) having been in prison ever (385 individuals); (iii) homelessness in the last 6 months (156 individuals); and (iv) being on methadone in the last 6 months (279 individuals).

19 Scottish Ambulance Service (SAS) NHS Lothian receives annual data, collected by SAS, on the number of callouts for suspected overdose and the number of occasions where naloxone was administered. Data reviewed was from April 2008 to March 2015.

Police Custody The recording system for those admitted to police custody is ADASTRA and Lothian Analytical Services extracted data on demographics and addictions from 1st August 2015 to July 31st 2016. The main challenge was the incompleteness of the data. Very often the questions relating to frequency and type of drug use were not recorded via the dropdown menus and free text analysis was not done. This means that for drug-related cases the data is not representative.

HMP Edinburgh Routine data was reviewed from the Scottish Prison Service (SPS) Prison Survey 2015, NHS Lothian hepatitis C testing activity in Lothian prisons and SPS addictions prevalence testing (Scottish Public Health Observatory). Further information for 2016 was obtained from the VISION clinical system as part of another health needs assessment looking at out of hours work.

Qualitative information on the provision of harm reduction interventions in HMP Edinburgh and on liberation was gathered through meeting with healthcare, third sector and prison through-care staff, a survey monkey questionnaire for staff, and interviews with prisoners.

It was a challenge to access prisoners known to be injectors (especially female) because of logistical issues such as short notice release, transfer, court dates and the daily routine of the prison. Feedback on experiences of harm reduction during prison sentences and as part of liberation was also drawn from a number of the people who inject drugs who were interviewed in the community.

Further information was sought from the women’s project, Willow. The service takes referrals for women who are resident in Edinburgh, or returning to Edinburgh from custody and all data is recorded on the SWIFT database. However, it was not possible to obtain this information within the timescale of the project.

Drug Testing and Treatment Orders (DTTO) It was not possible to collect information on DTTO within the timescale of the project.

Homeless Database City of Edinburgh Council records details of homeless individuals on the council’s homeless database. This database was searched for those who had presented as homeless and were recorded as being a current drug user between 1st August 2015 and 31st July 2016. There is no standard question about drug use or blood-borne

20 virus (BBV) status and therefore a free text search was done which included the type of drug, route of administration, volume and frequency and self reported BBV status. Free text data was entered in many forms and so this approach produced limited information. A request was made to marry up the homeless data with data collected on Edinburgh Common Housing Outcomes (ECHO) database, but this was unable to be performed as data on a client’s drug use is no longer collected on this database.

It was not possible within the timescale of the project to obtain historical data from Street Work, a third sector organisation working with the homeless population, because the recording system had recently been transferred over to a new one.

Accident & Emergency TRAK is a live system used in NHS Lothian to record demographic and clinical information on patient admissions. It does not record information on people who are assessed in A&E but not admitted. Lothian Analytical Services, conducted a search of TRAK for in patient admissions between August 1st 2015 and July 31st 2016. The search included International Classification of Diseases (ICD10) diagnosis codes for ‘Mental health and behavioural disorders due to use of ‘psychoactive substances’’ and a search for ‘cellulitis’ was also carried out since there had been a large outbreak of skin and soft tissue infections in Edinburgh the previous year. The cohort was further analysed for possible injecting drug users by isolating admissions from those diagnosed with use of either opioids, cocaine, other stimulants or multiple/other psychoactive substances, along with those diagnosed with cellulitis.

Prior to this needs assessment, a previous analysis was conducted of admissions through A&E between April 2013 and December 2015 - which included the peak of novel psychoactive substance (NPS) use in Lothian. This cohort identified people using the same ICD10 codes, and included a free text search of TRAK for names of NPS substances.

Drug-Related Deaths (DRD) The NHS Lothian DRD coordinator routinely reports to the National Drug-Related Deaths Database. Data is collected from the following sources: Police Scotland, NHS services (primary, secondary and community services), local authority social services, pathology and toxicology services, criminal justice, and third sector agencies working in the field of substance misuse. For the purposes of this assessment, data from 1st January to 31st December 2016 was analysed.

Take Home Naloxone Provision NHS Lothian collects and reports data according to the National Naloxone Programme. The naloxone coordinator and the NHS Lothian Primary Care Facilitation Team provided data on delivery and uptake of naloxone for the period 1st January 2016 to 31st December 2016.

21 Opioid Substitution Therapy (OST) Provision For specialist services, data on numbers in treatment and their demographic characteristics was collected from SMR25a for the period 1st April 2015 to 31st March 2016. The SMR25a form is filled out for all drug users enrolling in specialist services. The data set is not complete although there have been marked improvements in the collection of this data in the last few years. Similar data for patients treated under the drug misuse National Enhanced Service (NES), was provided by the Primary Care Facilitation Team from the NES database.

Blood-Borne Virus (BBV) Testing NHS Lothian virology provides routine updates on the number of tests for BBV each quarter. To determine the proportion of people newly registered with specialist drug services who have received a BBV test, data from SMR25a for the period 1st April 2015 to 31st March 2016 was linked by Community Health Index (CHI) to the NHS Lothian virology laboratory database for the same time period. People in the cohort who were tested for hepatitis C (HCV) in the same time period were identified as were people who had ever tested positive for HCV. Individuals with a negative HCV antibody test prior to 2015 were considered eligible for re testing in the year from last test. To determine the proportion of patients newly registered with the drug misuse NES, the Primary Care Facilitation Team provided data for January 1st to December 31st 2016 for those who were classified as current injecting drug users. These were linked using the CHI number as above. Not all samples have a linked CHI so it is possible that some positives may not be accounted for.

Blood-Borne Virus (BBV) Treatment Data on referral, retention in treatment and treatment outcome was collected for people identified as ‘current injectors’ or ‘ex injectors’ from the HCV database at the Royal Infirmary of Edinburgh (RIE). This data base includes patients from the RIE and also community sites at Edinburgh Access Practice, Musselburgh and Howden. Data from the treatment database was used to construct a ‘Piot-Fransen’ model. This is a tool that helps identify losses to follow up in the patient journey from positive test to cure.

Discarded Needles Data was collected on locations of the needle finds between August 2015 and July 2016 using: • Edinburgh Council’s databases APP Civica and Confirm. This covers all needles collected from public places, usually following a report from the general public. • Data from the University of Edinburgh security team on needle finds from their routine patrols. This covers needles that were found on city centre university premises. • Essential Edinburgh an organisation contracted to provide a cleaning service within the boundaries of the business improvement district.

22 Community Safety Police Scotland drug dealing intelligence was reviewed and mapped for the period August 2015 to July 2016.

3.2 Corporate Current injectors and people in recovery Current injectors were consulted through 29 semi structured interviews in a variety of settings (Table 3.1). Participants were recruited via professionals working in the different settings. This was mostly opportunistic and therefore relied on participants being prepared to give up time in addition to that which they had already allocated for their appointment or whatever service they were attending. Participants were judged to have met the criteria for inclusion (current or recent injector) through being a user of the service where they were recruited. A £10 shopping voucher was offered to everyone who completed the interview. The length of time taken to go through the questions ranged from 10 to 50 minutes. This was due both to participant (e.g. difficulty in concentrating or remembering) and environmental (e.g. background noise, presence of a ‘chaperone’) factors. People in recovery were consulted through a focus group of four participants, recruited through Spittal Street Centre.

Table 3.1: Number of people who currently inject drugs interviewed in different settings Setting Number of interviews Prison 3 The Access Practice and other GP practices 5 Hostel for homeless people 5 Specialist drugs services 9 (North East Hub and Spittal Street Centre) Pharmacy 3 Police custody 4

The interviews and focus group were carried out by two interviewers, a policy officer/researcher from Public Health and a Senior Health Promotion Specialist. Verbal consent was sought at the start of each interview and most were recorded and transcribed.

Homeless people Thirty people took part in semi structured interviews as part of an undergraduate project. Interviews were carried out in four settings - Edinburgh Access Practice, The Access Point (Leith Street), Salvation Army day drop in service and the Streetwork Crisis Centre. All participants were at least 18 years old and had injected drugs at least once. All were currently homeless or in homeless accommodation or had been previously. All participants gave verbal consent and answers were written down.

23 Service providers Service providers were consulted through an online survey (Appendix 1). The following groups were included: local authority (community safety), community partnerships (alcohol & drug partnerships, Inclusive Edinburgh), NHS (Substance Misuse Directorate, pharmacy, general practitioners, SAS, Edinburgh Access Practice, A&E), third sector providers (CGL, Turning Point, Streetwork), Police Scotland.

3.3 Comparative The comparator used for this assessment is national guidance and recognised best practice for harm reduction and addiction services. The assessment aimed to identify how best to implement and improve upon this.

3.4 Analysis Local epidemiological data was analysed by Lothian Analytical Services, data linkage was carried out by the NHS Lothian virology lab and the Primary Care Facilitation Team, and the Edinburgh sub analysis of the NESI survey was done by Health Protection Scotland.

The qualitative information gathered from interviews, focus groups and staff survey was analysed thematically.

The needs assessment core group reviewed all data for ‘sense checking’ and this was presented to the steering group so that conclusions and recommendations could be made.

3.5 Consultation The draft recommendations were discussed at a ‘conversation cafe’. Peer representatives of service users, and representatives of all staff groups working with injecting drug users provided feedback which has been incorporated into the report and is detailed in Appendix 2.

24 4.0 Current Service Configuration

Adult addictions services are delegated to the Edinburgh Integration Joint Board (IJB) and the responsibility for planning and developing these services sits with the Edinburgh Alcohol and Drug Partnership. The transition to a new locality model for harm reduction, treatment and recovery services for adults, their families and children began in April 2016 (Figure 4.1). Third sector and primary care services are already aligned and ‘locality managers’ manage a multidisciplinary nursing, occupational therapy and social work team.

Figure 4.1: Map of City of Edinburgh localities

4.1 Adult services tiered provision In 2002, the National Treatment Agency published a four tier model for treatment services [9]. Figure 4.2 indicates the location of current service outlets.

Tier 1- Health and social services that interface with drug and alcohol care Services work with a wide range of people including drug users, but their sole purpose is not drug or alcohol care. The role of Tier 1 services includes the provision of their own services plus, as a minimum, identifying drug users and referring them to treatment services. However there are opportunities for Tier 1 services to provide injecting equipment (IEP), take home naloxone (THN), blood-borne virus (BBV) testing, wound care, peer support and drug and alcohol advice.

25 Service providers in the City of Edinburgh Acute medicine, prisons, police custody suites, housing providers, homeless services, general practice, community pharmacy, children and families and adult social work, and third sector organisations, which in Edinburgh include Cyrenians, Streetwork, SACRO, Salvation Army and Gowrie Care

Tier 2 – Low threshold open access services Services range from providing basic IEP in addition to their core business such as pharmacies, through enhanced harm reduction services through recovery hubs to specialist services at Spittal Street Centre. They are easy to access and not necessarily delivered as part of a structured care plan.

Service providers in the City of Edinburgh Eleven pharmacies, four addictions hubs, Spittal Street harm reduction centre, the Edinburgh Access Practice for homeless people, outreach services (e.g. the Needle Exchange Outreach Network (NEON) bus) and a specific service for women involved in the sex industry and/or who use substances at Turning Point Leith.

Tier 3– Structured community-based addictions services Services include opioid substitution therapy (OST) programmes, structured psychological therapies (e.g. cognitive behavioural therapy, planned motivational interventions), community detoxification, and day care.

Service providers in the City of Edinburgh Locality addictions teams in the four recovery hubs, city wide teams based at Spittal Street Centre (Harm Reduction Team, PrePare, the Low Threshold Methadone Programme), counselling services (Edinburgh & Lothians Council on Alcohol, Simpson house, Crew counselling), substance misuse clinical psychology, drug testing and treatment orders (DTTO), prison addictions teams, and general practices that are part of the drug misuse National Enhanced Service.

Tier 4 – Specialist residential services Services include inpatient drug and alcohol detoxification, residential rehabilitation and residential drug crisis intervention. They require a higher level of commitment than is required for services in lower tiers and are rarely a first line treatment for injectors

Service providers in the City of Edinburgh Lothian & Edinburgh Abstinence Programme (LEAP), the Ritson clinic at the Royal Edinburgh Hospital, and out of area residential rehabilitation through social work.

26 Figure 4.2: Location of harm reduction services in Edinburgh

4.2 Injecting equipment provision Injecting Equipment Provision (IEP) refers to the provision of clean needles and injecting equipment free of charge to people who inject drugs. It is proven to decrease sharing of injecting equipment, to reduce the risk of transmission of blood- borne viruses and skin and soft tissue infections and to decrease high risk injecting behaviours [10]. The World Health Organization defines IEP 'coverage' as the percentage of injections 'covered' by sterile needles and syringes where the aim is to provide a clean needle and injecting equipment for every injection [11].

The Scottish Government document ‘Guidelines for Services Providing Injecting Equipment: Best Practice Recommendations for Commissioners and Injecting Equipment Provision (IEP) Services in Scotland’ recommends integration of IEP services with other interventions including BBV testing and treatment, Hepatitis A and B vaccination, sexual health, legal aid, social care, mental health, homeless/housing services, primary health care, dental care, counselling and emergency services [10].

Traditionally in Edinburgh the pharmacies have provided ‘general IEP’ and the hubs ‘enhanced IEP’, both supported by the specialist harm reduction team at Spittal Street Centre (Table 4.1). However recent co-location of substance misuse services alongside other health and social care services has restricted the ability of the hubs

27 to provide an enhanced IEP in all settings and some pharmacies are beginning to provide enhanced IEP in partnership with the third sector and harm reduction teams.

Table 4.1: IEP service classification IEP Level of Provision Service

General • Provides a choice of needles and injecting paraphernalia and IEP service basic information and advice. • Minimal assessment of clients’ needs and provide written and (pharmacy) verbal information about other services, signposting and referral. Enhanced • Provide needles and injecting paraphernalia with access to in IEP service depth advice and other harm reduction interventions • More in-depth assessment of clients’ needs and consultations in (hubs) relation to blood-borne virus (BBV) interventions. Specialist • Provide needles and injecting paraphernalia with access to in IEP service depth advice and other harm reduction interventions • More in-depth assessment of clients’ needs and consultations in (Spittal St relation to blood-borne virus (BBV) interventions.

Centre) • Access to wound care, other specialist health services

4.3 Opioid substitution therapy Opioid substitution therapy (OST) is the single most important intervention for improving the health and wellbeing of injecting drug users, and there is good evidence that this is linked to improved engagement with treatment, reduced drug use, reduced injecting, reduced crime, reduced HIV (and hepatitis) and a fourfold reduced risk of death [12-14].

For OST to achieve its protective effects services need to attract those in need and then engage them in at least 12 week’s continuous treatment [12,13]. It is most important that OST reaches those whose addiction makes their lifestyles most chaotic i.e. those least able to engage with structured processes and who are at the highest risk [15]. In practice, this means that we need to offer the fewest barriers and rapid unconditional access to effective levels of OST – a low threshold service. National best practice recommends that people presenting should be triaged and prescribing made available within 48 hours for those at highest risk [16].

The barriers set out in Table 4.2 are effectively indicators of discriminating practice and need to be addressed in any service focussed on equity and need.

28

Table 4.2: Potential barriers to access of OST [16-22]

Process issues: • Delays: delays to first appointment, delays between (multiple) appointments and delays before titration. • Poor access: distance, fixed and inflexible appointment times, and missed appointments resulting in major setbacks or discharge. • Compulsory engagement in unwanted interventions over and above prescribing (e.g. counselling, intrusive assessments). • Poor availability of other interventions needed e.g. housing, general health, emotional, psychological. • Weak links and referral pathways between the clinical addictions service and other professionals that are trusted or needed by the patient e.g. third sector colleagues and secondary care. • Lack of reminders e.g. via supportive people or phone/ text contact.

Emotional and interpersonal

• Internalised stigma being confirmed or previous trauma being re-stimulated

e.g. through rejection, over reaction to boundary-testing or intrusive

assessment.

• Strict behavioural restrictions e.g. exclusions from buildings and services. • Lack of a consistent, stable relationship with a professional. • Ambivalence not being addressed.

Clinical barriers

• Inability to offer safe, rapid titration with regular prescribing reviews even if some missed appointments occur; leaving the patient at sub therapeutic doses for too long and unable to progress. • Fear of replacing one dependency with another and lack of belief in OST as a pathway to recovery (“i’ll never get off”). • Lack of choice of medication e.g. for some people there can be strong resistance to methadone.

• Poor management of missed appointments or missed pickups.

• High clinical risks that make rapid titration more problematic e.g. because they lead to discharge or prevent increases in dosage. • Use ‘on top’ or poly substance being perceived by clinicians as a barrier to titration e.g. alcohol use preventing dispensing, positive samples leading to reduced dosing etc. • Harm reduction not being accepted as a core part of the service and a goal in itself.

29 In Edinburgh there are 6 entry points to OST and other structured services:

1) Recovery Hubs in individual localities 2) Low threshold methadone programme (LTMP) (high intensive service for high risk injectors) 3) Edinburgh Access Practice (EAP) for homeless people 4) Drug Treatment and Testing Order (DTTO) team. 5) Primary care drug misuse National Enhanced Service (NES) (a few GPs choose to initiate some patients on OST) 6) HMP Edinburgh addictions services

Each pathway aims to engage, assess needs and titrate people to a sufficient dose of OST to stabilise their drug use. Alongside this, other clinical and psychosocial interventions are offered to enable stabilisation of other areas of their life and progress towards recovery. When the patient has achieved stability, they will generally proceed to maintenance with primary care or, for patients with more complex needs, maintenance with the locality teams. From there, depending on their needs and goals, they may remain on OST indefinitely, or safely reduce and cease their prescription.

4.4 Take home naloxone Naloxone is a drug which reverses the effects of opioids. It is recommended as an intervention to prevent overdose by the World Health Organization and a review by the UK Advisory Council on the Misuse of Drugs recommends that naloxone should be made widely available to tackle the high numbers of fatal opioid overdoses in the UK [23,24].

The Naloxone Programme trains people at risk of opiate overdose to use naloxone. Across Lothian take home naloxone (THN) kits are distributed through drug treatment and harm reduction services, on release from prison and police custody, through carers groups and toxicology hospital wards. A service evaluation of Scotland’s THN programme in 2014 concluded that there is a need for greater involvement of all services that come into contact with people at risk (e.g. GPs, social services, addictions, A&E departments, community pharmacists), more outreach to those that do not use services, and more guidance on the role that peers can play [25].

4.5 Hepatitis C testing and treatment services Blood-borne Virus (BBV) Testing Venous sampling, Dry Blood Spot Testing (DBST) and Rapid Point of Care Tests (POCT) are all available in NHS Lothian through IEP and other addictions services in compliance with the Scottish Government’s guidelines [10,26]. Lothian has a team of three specialist BBV testing nurses who train and support locality addictions teams third sector and nursing staff, and prison nurses, to undertake BBV dry blood spot testing. In addition outreach BBV testing with men who have sex with men (MSM) is provided by the ROAM outreach team and Waverley Care – which also does testing

30 with the African community. Lothian currently has 93 GP practices (80% of the total) contracted to the drug misuse National Enhanced Service (NES) to provide testing and other services for drug users, and, there is an additional local enhanced service for hepatitis C testing which remunerates GPs to test the most at risk groups.

HCV Treatment National guidance recommends that everyone is eligible for hepatitis C treatment, including active injectors [27,28]. Treatment type is largely determined by genotype. Guidelines for hepatitis C treatment in Scotland are set out in the ‘National Clinical Guidelines for the treatment of HCV adults’ [29]. These guidelines are updated on a regular basis due to new medications coming to market.

The two hepatitis C treatment centres in NHS Lothian take referrals directly from all health professionals, social care and third sector workers. There is a range of staff in place to support patients’ engagement with the referral pathway from testing through to completion of treatment. These include drugs workers, BBV clinical nurse specialists, hepatitis C social workers, dieticians, Waverley Care support workers, practical support including lifts to appointments from Positive Help, psychiatry, and mental health nurses.

Hepatitis C assessment and treatment services are provided in the following locations:

− Western General Hospital Infectious Diseases Unit: with outreach clinics at Turning Point Leith, drug treatment and testing orders (DTTO), and HMP Edinburgh

− Royal Infirmary Liver Unit: with outreach clinics at the Access Practice, Musselburgh and Howden.

Treatment is led by clinical nurse specialists, with medical review as part of the pathway. Treatment can be provided wholly in community-based outreach clinics, usually but not always with just one visit to the hospital clinic. Medications are prescribed by the hospital staff but are dispensed by community pharmacists. Step up and step down care is provided by Waverley Care at Milestone House for patients needing extra care and support during treatment. Support in the community is available for people with hepatitis C from workers at Waverley Care and from the hepatitis C specialist social worker at City of Edinburgh Council. Hepatitis Scotland facilitates a patient involvement and opinion group called Lothian Hepatitis Voices, and British Liver Trust has set up a new support group called Capital C.

31

4.6 The young people’s substance use service The Young People’s Substance Use Service is a partnership between the NHS Lothian Adolescent Substance Use Service (ASUS), the City of Edinburgh Council Young People’s Service and the third sector (Crew, The Health Opportunities Team, Circle, The Junction).

Substance use services are provided for young people aged of 13 to 25 years, depending on the organisation, with no upper age limit if accessing Crew. ASUS, the tier 4 service (Figure 4.3) will work mainly with complex cases but only up to the age of 19. If a young person is aged between19-21 and requires specialist medical intervention then ASUS can assist in seeking the relevant support in adult services.

Third sector organisations with specialist substance use workers are funded to provide therapeutic 1:1 or group work to young people with substance use issues or those affected by parental substance misuse. Each service covers a specific locality area (e.g HOT & the Junction – South East, Circle- North West, Crew- city centre, Adolescent Substance Use Service (ASUS)- city wide). Referrals are generated from GPs, schools, social work and young people themselves. The specialist workers are linked to specific schools across the localities and deliver drug education in schools.

Figure 4.3: Young people’s Substance Use Service tiered service provision

Tier 1- Generic care e.g. GPs, Primary Care, Schools

Tier 2- Generic youth clubs

Tier 3- Third Sector with Specialist Substance Use worker (Crew, HOT, the Junction, Circle)

Tier 4- ASUS (NHS Lothian)

32 4.7 Integration of services The Scottish Government ‘Guidelines for providing injecting equipment’ and the Scottish Government & COSLA ‘Quality Principles: Standard Expectations of Care and Support in Drug and Alcohol Services (2014)’ recommend that services are combined and coordinated so that they meet the needs of the individual [10,30].

The recovery hubs model in Edinburgh aims to do this and hubs are designed to be ‘one stop shops’ that bring together a range of treatment and support services for both alcohol and drug addiction. The Edinburgh Access Practice, the Harm Reduction Team and the North East recovery hub have the capacity and facilities to meet the majority of harm reduction needs onsite whereas the other hubs have to sign post or refer onto other services (Appendix 3). This is partly due to changes in service premises and limitations on what can be provided from specific local authority buildings.

However, integration of services does not mean that everything has to be put into one package. The World Health Organisation identify the aim as the provision of services that are not disjointed for the user and which the user can easily navigate [31]. For specialist care, the issue is how their activities are linked to other services. There are links and referral pathways from the hubs to relevant services but evidence indicates that up skilling of hub staff and more in reach would be more likely to meet the needs of the injecting population; opportunistic engagement around harm reduction is less likely to result in loss to follow up than sign posting or referring onto other services.

Service users’ involvement in the development and delivery of integrated services has contributed significantly to the evolution of effective drug and alcohol treatment systems [32]. In Edinburgh and the Lothians, service user involvement has progressed significantly over the years. The Edinburgh Alcohol & Drugs Partnership and NHS substance misuse service work with those who have lived experience of addiction and recovery, including family members and carers, to improve services. In 2012 a joint framework for involving people with lived experience was developed [33]. A service user involvement strategy is in place and there is ongoing development of peer volunteer programmes across third sector and NHS drug services in the city.

33 4.8 Key findings: Current service configuration

• The configuration of addictions services in Edinburgh is compliant with international and national guidance.

• The recent funding cuts and reorganisation of services have resulted in fewer dedicated buildings for addictions services and less staff time available to offer long hours of drop in access in those buildings. More services are being hosted in neighbourhood buildings and social spaces and regulations within these buildings limit the services which can be offered in them (especially IEP).

• The cuts have necessitated the development of new models for services e.g. sessional drop ins across the whole geographical locality but for fewer hours, and ‘enhanced’ in-reach to pharmacies. What these changes mean in terms of service cost-effectiveness, reach and accessibility is yet to be seen.

• Services across the city are striving towards more patient centred care but are limited by systems and resources.

• Opportunistic harm reduction interventions are key measures in meeting the needs of people who inject drugs. The skill mix of and support for staff needs to be reviewed so that ‘multidisciplinary individuals’ are able to provide holistic care.

• Services do work together but despite this, referral and signposting, non- attendance and losses to follow up can be problematic. There are opportunities to further develop direct links that support harm reduction between and within tiers of services.

• Integration of care should be seen as a continuum. Although a lot of work has gone into provider integration and service user involvement, ongoing challenges mean that it is often not possible to provide continuity of care for patients.

34 5.0 Opioid Substitution Therapy

There are an estimated 6,600 problematic drug users in Edinburgh, of whom 4,500 are male and 2,100 are female [34]. Based on ‘snap shots’ of the caseload, there are approximately 3,4401 patients receiving clinical treatment for drug use in Edinburgh at any one time; i.e. about half of those in the city of Edinburgh who may benefit from prescribing are receiving it (Figure 5.1). This is lower than treatment reach in England (in 2011-12, 62% of opiate users in England were in treatment) but significantly better than the Scottish average of 35% [35]. In Edinburgh and the Lothians, the general aim is that specialist services initiate care and manage the most complex patients while primary care provide maintenance treatment and manage more stable patients.

Figure 5.1: Approximate OST caseloads of different services in Edinburgh 3000

2500

2000

1500

1000

500

0 Primary care LTMP (daily The Access Locality (Excluding DTTO and weekly) Practice teams the Access Practice) Caseload 60 170 215 590 2400

5.1 Treatment in specialist services Of the 1,200 people entering specialist treatment in 2015-162, 240 (20%) reported injecting within the last month and a further 356 (30%) reported ever injecting but not within the last month (Table 5.1).

Table 5.1: Number of people in specialist drug treatment, Edinburgh 2015-16 Non-injectors 604 (50%) Former injectors 356 (30%) Current/ recent injectors 240 (20%) Source: ISD SMR25a records for SMD drugs treatment patients, 2015-16

1 Sources: LTMP and DTTO (teams’ internal data), locality teams [36], the Edinburgh Access Practice and primary care (PCFT). Note that there is a risk of double counting. 2 Sources: locality clinical teams, LTMP, DTTO and LEAP. Note that there is a risk of double counting.

35 Younger patients entering drugs treatment are less likely to use heroin and less likely to be injectors [37]. However, the age and the complexity of the population in treatment has increased in recent years; this is true for those presenting for the first time and those in established treatment.

In Edinburgh during 2015/16, 24% of people in specialist treatment were aged over 40 years; 19% of current injectors and 32% of people who had ever injected. Nationally, the percentage of individuals assessed for specialist drug treatment who were aged 35 and over increased from 30% in 2006/07 to 50% in 2015/16 [37]. A recent review of older people shows much higher rates of co morbidities and hospital admissions compared to the general population and makes recommendations to address these issues through specialist and primary care services [38].

5.2 Treatment in primary care Over 2016, 2,817 people in Edinburgh received treatment for problem drug use in general practice (excluding the Edinburgh Access Practice) under the drug misuse National Enhanced Service (NES). This represents about 80% of the total in treatment for addictions. Most were prescribed opioid substitution therapy (OST): approximately 1,900 (67%) were prescribed methadone, and 150 (5%) buprenorphine.

The majority were coded as either previous injectors (52%) or had never injected (33%), and 378 (13%) were current injectors (defined as those reporting injecting in the last 12 months). Of current injectors, 247 (65%) were aged 30 to 49 years and 24% were female. There was no significant difference between localities and the age and sex distribution in Figure 5.2 is representative of the population in general practice treatment.

Table 5.2: Number of people in Edinburgh receiving treatment for problem drug use by locality Latest recorded North South South North Total injecting status West West East East Currently Injecting 71 60 160 87 378 Never Injected 216 211 156 337 920 Previous Injector 312 312 367 488 1479 Not recorded 9 1 20 10 40 Total 608 584 703 922 2817

36 Figure 5.2 Age group and gender of drug misuse National Enhanced Service (NES) patients in Edinburgh North East 2016

160 140

120 100 80 Male 60 Female

Number of of Number patients 40 20 0 20-24 25-29 30-34 35-39 40-44 45-49 50-54 55-59 60-64 65-69 70-74 Age

5.3 Description of the main pathways to opioid substitution therapy There are six pathways into OST. Each provide assessment and titration, and aim to support recovery or open-ended maintenance through either primary care or locality teams.

Pathway 1: Access though locality teams (hubs) This is the most widely used pathway into OST. Rapid treatment access is a long term challenge in Edinburgh and prescribing services have never consistently achieved the HEAT target of 90% of those referred being engaged in treatment within 3 weeks of referral [39]. This challenge has been exacerbated by declining resources.

Arrangements for access to prescribing via the hubs were revised in April 2016 and the standard pathway is set out in Figure 5.3. There are weekly, or more regular, drop in sessions at eight locations in the city where people can access initial assessment with a third sector worker. The pathway thereafter involves assessment from key workers, nurses and prescribers (GP’s with a special interest [GPwSI] in addiction, or consultants). Initial assessment identifies people at highest risk (e.g. recent release from custody, those with low tolerance or high risk injecting practices) and their assessment can be expedited. The pathway is flexible; clients are risk assessed at each stage and it is possible to accelerate progress towards titration or refer to the Low Threshold Methadone Programme (LTMP) at Spittal Street Centre.

37 Figure 5.3: Standard pathway from presentation to titration onto OST via hubs teams

The minimum number of assessment appointments needed prior to initiation of prescribing for a new patient can be as low as two for high risk clients, but typically it would be six or more with two to four practitioners involved. Once a patient is accepted for nursing assessment the wait is short and service data indicates that over 90% of people engage with treatment. However, overall the number of new patients engaging with treatment is much lower.

Almost all the patients on OST in the locality teams are on the caseload of a nurse and for many years the main restriction on access to OST has been the finite nursing capacity available. Although the drug misuse NES GPs do manage some complex patients and non prescribing practices tend to be in areas with low problem drug use, the numbers entering the specialist service cannot always be balanced by the numbers leaving. As resources have reduced this has resulted in increased pressure on the nurse caseloads, and staff shortages in nursing or voluntary sector teams can lead to delays in treatment access.

National guidance recommends that treatment for drug misuse should include psychosocial aspects and the pathway provides opportunities for nursing and third

38 sector staff to provide this support [40]. It is not clear, however, that this is always effective; a recent small audit in Edinburgh North West, indicated that most patients disengaged from third sector services once started on OST, and delivery of psychosocial interventions by the pressurised nursing teams is challenging.

Table 5.3: Strengths and challenges: access to OST though locality teams (hubs) Strengths Locality based, easy access for initial presentation and ongoing treatment Comprehensive, multi-disciplinary range of interventions, some co-located services Ability to fast track to OST and LTMP based on risk Thorough assessment and screening of patients for ‘capacity to benefit’ Follow up and outreach provided by the third sector, social workers and nurses Integration with primary care in localities Challenges High demand and throughput challenges Complex assessment process for non-urgent patients Long waits High drop-out rates pre-titration Where no physical ‘hub’ continuity of care difficult across dispersed service locations

Pathway 2: Low threshold Methadone Programme The Low Threshold Methadone Programme (LTMP) is delivered by the Harm Reduction Team at the Spittal Street Centre. It treats high risk injectors who self- present or who are referred by the Hubs. Most have psychiatric or other co- morbidities, present behavioural risks or are homeless. At any given time, there are approximately 30 people being seen with daily appointments and 30 with weekly appointments.

LTMP offers the most intensive supervision and support for people initiating OST. There is daily contact with the therapeutic team (weekday medication is collected and consumed on the premises) and twice weekly contact with a non-medical prescriber (NMP). Clients can opportunistically engage with the other psychosocial, and clinical interventions available at Spittal Street Centre. These include routine contact with people with lived experience and a recent qualitative study found that peer support enables service user engagement with treatment [41].

Evaluation and monitoring of the model indicates that open drop in sessions where patients can access support from a team of workers, versus, reliance on pre-booked 1:1 appointments for all contacts, can increase retention in treatment [42]. Following titration and stabilisation, people are seen weekly in the LTMP (with daily collection from pharmacy) and when ready they return to general practice or locality teams.

39

Table 5.4: Strengths and challenges: Low Threshold Methadone Programme Strengths Good access to initial and ongoing care with good retention and continuity of care High intensity intervention including weekday contact with therapeutic staff Opportunistic engagement in other psychosocial and clinical interventions Safe rapid titration with twice weekly increases, close observation of mental and physical state, easy to resume OST following missed doses Challenges Geographically limited and regular attendance at a single location is required Slightly longer wait and more complex access than the Edinburgh Access Practice; patients can only self-refer once per week Integration with other teams and the stepped care model is unclear

Pathway 3: The Edinburgh Access Practice. The Edinburgh Access practice provides OST at the Spittal Street clinic. Unlike other general practices, Edinburgh Access Practice routinely initiates prescribing with nursing non-medical prescribers (NMPs). The pathway is the shortest and simplest route to OST requiring a minimum of two appointments with the nurse and with weekday dispensing supervised in pharmacies. It is available only for those who are homeless or not registered with another GP. The demand for the service has risen sharply in recent years and there is limited opportunity for throughput by returning patients to mainstream primary care when they achieve stable housing.

Table 5.5: Strengths and challenges: Edinburgh Access Practice Strengths Good access with a single assessment process and practitioner relationship in a single location Safe, rapid titration with 1-2 increases per week Pharmacy medication pick up is flexible on location and time Very close linkage to general medical interventions in primary care Challenges Geographically limited and regular attendance at a single location is required Less intense observation than LTMP and fewer opportunities for other interventions Access to this very low threshold pathway is not vulnerability/ risk, it is homelessness Not directly linked to any wider recovery options

40 Figure 5.4: Number of drug misuse National Enhanced Service (NES) patients at the Edinburgh Access Practice with one appointment in the previous 6 months 250

200

150

100 Number of of Number patients

50

0

Date

Pathway 4: Drug treatment and Testing Order The Drugs Treatment and Testing Order (DTTO) team offer OST as part of a legal order and can only be accessed through a court sentence. It is a major provider of OST and approximately 170 of the 200 people sentenced to a DTTO at any given time will be on OST. There is high engagement, with 70-80% of those assessed going on to treatment which is initiated within one month of an order. The team as a whole provides a diverse range of practical and therapeutic support, engagement with which is coerced by the court order.

Table 5.6: Strengths and challenges: Drug Treatment and Testing Order Strengths High intensity of psychosocial support and a legal incentive to engage and progress Safe, rapid titration with 1-2 increases per week Access to a multidisciplinary team to provide motivational and wrap around support Challenges Necessarily restricted eligibility Not closely integrated with mainstream treatment services Intensity of support during order cannot readily be sustained after its completion

Pathway 5: Prison This is described in the chapter on Criminal Justice Services

41 Pathway 6: Drug Misuse National Enhanced Service After stabilisation, most individuals in all pathways move to ongoing OST with their GP. This ability to retain patients in treatment without further pressure on the specialist teams is the main reason that Edinburgh has a relatively high proportion of opiate users engaged with OST. In this setting, patients probably have improved access to care for co-morbidities, but may have reduced access to psychosocial interventions and other harm reduction measures, although there are examples of third sector outreach in practices to provide additional support.

Table 5.7: Strengths and challenges: Drug Misuse National Enhanced Service Strengths Large numbers of people are cared for, in accessible locations at relatively low cost Provision of general medical services GPs have long established relationships with the individual and their community Challenges Inconsistent provision across practices and the risk that GPs capacity may reduce It is hard for GPs to get patients “up” the stepped care model to restart OST Variable intensity of review and psychosocial interventions limit patient progress

5.4 Evaluation of the opioid substitution therapy pathway in Hubs A review of OST provision in Edinburgh hubs was commissioned by the Edinburgh ADP in 2016 [36]. Evaluation of the pathway identified high levels of drop out between initial presentation and prescribing; of those presenting, approximately 20% of individuals received OST and 50% disengaged from all services within less than 3 months. This data requires careful interpretation as it was gathered at a time of transition to a new model of care and does not offer a comparison with the previous models of care. However, it does suggest a significant clinical risk.

The review proposed a stepped care model of OST in localities to lower the barriers to prescribing. This would include an extended role for third sector workers, non- medical prescribers and closer integration with GP prescribing. However, these recommendations create significant challenges in terms of governance, use of the skill mix within the teams and the relationships between primary and secondary care. Furthermore, there is a view that the move to third sector as the first point of referral following triage for most new assessment has contributed to delays in accessing OST and that one way to reduce delays and increase retention may be to increase investment in Substance Misuse Directorate (SMD) nursing. At this point in time the recommendations have not been adopted.

5.5 Opportunities to build on current best practice To expand or replicate, in other areas of Lothian, the approaches of the Edinburgh Access Practice or LTMP in their current form would be extremely resource intensive. However, elements of the approaches could be adopted elsewhere according to the needs of the local population and capacity of locality teams. Key

42 elements may include: task shifting of third sector staff to take on roles such as testing for drugs and blood-borne viruses; non medical prescribers in locality teams; increased skill mix of locality teams e.g. to include wound care and psychosocial interventions; and an increased contribution made by people with lived experience.

5.6 Key findings: Opioid substitution therapy

• The six pathways to OST in Edinburgh provide a good range of options for drug users in the city and are linked with psychosocial and other health and harm reduction interventions.

• In Edinburgh, 52% of those who may benefit from prescribing are receiving it; this is lower than the England figure of 62% but higher than the reported Scottish average of 35%. (ISD 2014)

• Low intensity opioid substitution therapy in primary care is an essential part of the service and includes up to 80% of the case load in Edinburgh.

• An increasing number of patients on OST are over 40 years and have much higher rates of comorbidities than in the general population. (drug misuse NES data)

• A 2016 audit of specialist OST services, conducted at a time of transition, found long waits and low retention; of those presenting, approximately 20% of individuals received OST and 50% disengaged from all services within less than 3 months. This poses a significant clinical risk.

• At present, there is a lack of reliable routinely available data which can be used to monitor access to and retention in OST in Edinburgh.

• There are opportunities to learn from, and adapt for other localities, current good practice in Edinburgh such as the Low Threshold Methadone Programme and Edinburgh Access Practice low threshold services.

43 6.0 Injecting Equipment Provision

6.1 Patient characteristics Number of IEP service users Individual clients were identified by searching the Needle Exchange Online (NEO) database for unique identifiers. A number of users register with different unique identifiers at different sites so analysis by frequency of ‘attendance’ was conducted and it was decided to base subsequent analyses mainly on identifiers that appeared greater than or equal to five times (Table 6.1). This more accurately reflects the true number of people accessing IEP services although the estimated numbers of attendees is likely to be an underestimation of the number of drug users as it does not account for people who do not use services or people who access injecting equipment via secondary distribution [43].

On this basis, an estimated 1,319 people regularly accessed IEP services in the year Aug 2015-Jul 2016. Of these regular attendees, an estimated 157 ‘frequent attendees’ were identified, defined as those who had 50 or more transactions in the year using the same unique identifier on NEO (Table 6.1).

Table 6.1: Number of clients regularly accessing IEP services in Edinburgh based on NEO

Total unique ID Clients >1 Clients ≥5 Clients ≥50 numbers transaction transactions transactions 'Regular 'Frequent attendees' attendees' 3921 2301 1319 157

Demographics Of the ‘regular attendees’, 1,053 (80%) were male and 266 (20%) female. This may be an overestimation of the proportion of male clients as more females access injecting equipment through secondary distribution [43]. The ethnicity of 95% of clients was British Caucasian, 78% of ‘regular attendees’ were aged 25-45 and 58 (4%) were aged 16-24 (Figure 6.1).

44

Figure 6.1: Age and gender of ‘regular attendees’ at IEP services based on NEO

Male Female

65+ 2 0 4 2 55-59 7 2 43 8 45-49 129 11 185 30 35-39 237 55 Group Age 257 74 25-29 145 70 36 14 16-19 8 0 300 250 200 150 100 50 0 50 100 Number of Clients

Housing Status Of ‘regular attendees’, 30% reported being homeless, roofless or living in temporary or unstable accommodation and 58 of 157 (37%) ‘frequent attendees’ reported homelessness. Of 475 people interviewed in the 2015/16 Needle Exchange Surveillance Initiative (NESI), 156 (33%) reported homelessness in the last 6 months compared to the national average for Scotland of 22%.

Figure 6.2: ‘Regular attendees’ at IEP services by housing status based on NEO Unknown 27, 2% Roofless - sleeping rough Homeless - 40, 3% temporary/unstable accommodation 358, 27%

Owned/Rented 894, 68%

Substances Used The vast majority of clients (964 clients, 73%) reported injecting opiates followed by new psychoactive substances (NPS) (149 clients, 11%) and image and performance enhancing drugs (IPEDs) (43 clients, 3%). NESI 2015-16 reported that 29% of those surveyed had used NPS in the last 6 months versus the national average of 10%.

45 People on NEO who reported IPED use had a lower number of average transactions per client. Therefore to eliminate duplicates and mitigate under counting, those who used their unique identifier twice or more were identified as ‘regular IPED attendees’ and 225 clients were identified. IPED users were mostly male and were younger compared to other people who inject drugs attending IEP services (Figure 6.3).

Figure 6.3: Age and gender of those using Image and Performance enhancing drugs with >=2 transactions based on NEO

Male Female

55-59 3 0 50-54 1 0 45-49 10 2 40-44 15 1 35-39 22 2 30-34 54 3 Group Age 25-29 60 3 20-24 38 1 16-19 10 0 70 60 50 40 30 20 10 0 10 Number of Clients

Data on ‘chemsex’ and men who have sex with men is not reliably recorded on NEO. However, a survey among gay men living in Lothian, conducted by Waverley Care in 2016 indicated that of 151 men interviewed, poppers, ‘viagra’, cannabis and stimulants were most often used. In the 91 cases where the method of taking drugs was known, 17 injected and 13 of 21 who responded did not reuse or share equipment.

Structured Treatment in people accessing IEP services Use of structured treatment was poorly recorded on NEO; 49.5% of IEP clients provided ‘no answer’ and it is unclear if this was due to poor recording of data, misunderstanding of the question or reluctance of clients to answer. Of those that responded, two thirds of IEP clients reported receiving structured treatment. This suggests that people on OST will still require access to IEP, and it may also indicate that some patients would benefit from a higher dose of methadone or an alternative replacement therapy. Forty eight percent accessed structured treatment via drug treatment services, 34% via their GP, and 6% reported being on a waiting list. Of those individuals who were homeless, 39% reported not being on structured treatment. According to the NESI survey, 58% of current drug injectors received prescribed methadone. Of 133 IEP clients answering a local survey, ‘Tell me 8 things’, 10% reported not knowing who to contact for further help and support in relation to treatment and recovery [44].

46 6.2 Risk behaviour Reuse and Sharing of equipment Of 428 Lothian respondents in the NESI survey 2015-16, 21 (5%) reported injecting in the last month with a needle/syringe that had been previously used by someone else, 83 (19%) reported injecting in the last month with other injecting equipment that had previously been used by someone else, and 20% of respondents had reused the same needle/syringe more than 5 times before discarding it in the last six months. These rates are higher than the national figures for Scotland of 3%, 13% and 20% respectively.

Time since commencing injecting NESI 2015-16 respondents in Lothian were found to have a shorter average time since onset of injecting than the national average (12.1 years vs 14.4 years), 58% of those surveyed reported first injecting between before the age of 25 years old and the median age for starting injecting was 24. Lothian also had a higher proportion of more recent injectors with 9% of injectors compared to 5% nationally having started within the last 2 years.

Complications from injecting The Spittal Street Centre injecting wound clinic saw 128 patients in 2016. Most had advanced complications of injecting and leg ulcers accounted for 75 (59%) of cases often requiring intensive treatment. This has increased significantly from previous years. The rise may be a consequence of increased and long term femoral injecting but may also reflect increased awareness and referral from locality services.

6.3 Service Utilisation NEO data indicates that most (83%) of ‘regular attendees’ access general services (community pharmacies) for injecting equipment provision. Of the 1,158 unique clients who attended general IEP services, 1,030 (89%) accessed these solely and did not access enhanced or specialist services.

Needles Dispensed Based on reported needle use from the NESI survey, a deficit of 29% in provision of needles in Lothian was found versus 28% nationally (Table 6.3).

Table 6.3: Percentage of needles dispensed compared to reported demand in NESI 2015-16 respondents (calculated as reported number of needles received / number of times injected) 2015-16 2013-14 2011-12 Lothian 71% 80% 74% Scotland 72% 85% 77%

Based on Lothian NEO data, the ratio of reported injecting frequency to the number of needles dispensed for ‘regular attendees’ shows that 46% of ‘regular attendees’

47 did not collect enough needles for their reported injecting frequency. However, a number of others collected significantly more needles than their reported injecting frequency and it is possible that secondary distribution is occurring given the overall deficit of needles was only 0.5%. Of the 133 IEP users surveyed, ‘Tell me 8 things’, 98.5% responded that they were being given enough supplies to enable clean sets of works for each injection [44].

Figure 6.4: Number of needles provided compared to reported injecting frequency based on NEO (mean average= - 32 needles per year per client)

600 543

500

400 344

300

200 161

82 100 42 16 6 3 1 1 0 -1500 to -1000 to -500 to - 0 to +499 +500 to +1000 to +1500 to +2000 to +3000 to +4500 to -1001 -501 1 +999 +1499 +1999 +2499 +3499 +4999 Number of Clients with >=5 Transactions >=5 with Clients of Number Quantity of Needles Dispensed per Year minus Minimum Needle Demand per Year

6.4 Location of services and users The postcodes of people accessing IEP services were identified from NEO and mapped by region (Figure 6.5). The highest concentration of regularly injecting users was located in Leith, North East Edinburgh and in South West Edinburgh and IEP services are well placed for access. Of 133 people surveyed at IEP sites as part of ‘Tell me 8 things’, 95% responded that IEP services were convenient to access [44].

6.5 Enhanced pharmacy pilots In 2017, a pilot was conducted in four Edinburgh community pharmacies to offer enhanced harm reduction interventions. This was held over eight weeks and offered blood-borne virus testing, naloxone, safe injecting advice and signposting for other services. A total of 83 people engaged with services across the four pharmacies and 60 people utilised the enhanced services. Of those using the enhanced service, 29 (48%) patients were given naloxone, 44 (73%) patients were given safer injecting advice and 49 (81%) patients were tested for blood-borne viruses. Of these, three were positive for hepatitis C antigen indicating active infection of which they were previously unaware.

48

6.6 Needle discards Data on discarded needles reported by Essential Edinburgh, the City of Edinburgh Council and Edinburgh University between August 2015 and July 2016 were collated and mapped (Figure 6.6). The numbers of reported works is small, and there is likely to be ascertainment bias due to increased surveillance in the city centre. However, this data does suggest ongoing street injecting in the Edinburgh city centre. This is supported by a survey of injecting drug users registered with the Edinburgh Access Practice, a majority of whom indicated they had injected on the street at some point and, and by mapping of police intelligence which indicates that drug dealing activity is concentrated mainly in the city centre.

49 Figure 6.5: Number of ‘regular attendees’ by postcode of residence based on NEO

50 Figure 6.6: Location and number of needle discards in Edinburgh (August 2015 – July 2016)

51 6.7 Key findings: Injecting equipment provision

Patient characteristics • There are 1,319 ‘regular attendees’ accessing IEP services. Of these 157 are ‘frequent attendees’ with more than 50 transactions a year (NEO 2015/16). • Most ‘regular attendees’ are Caucasian male and primarily use heroin/opiates (NEO 2015/16). • 58% ‘regular attendees’ are also on methadone/structured treatment (NESI 2015- 16). • One third of ‘regular attendees’ are homeless (NEO 2015/16). • Young people use IEP services: 58 (4%) of ‘regular attendees’ are aged under 25 years, the median age of commencing injecting is 24 years, and people injecting IPEDs are typically younger than opiate injectors. (NEO 2015/16, NESI 2015-16). • There is evidence of ongoing street injecting in Edinburgh city centre, although the actual numbers may be small.

Injecting equipment provision • An estimated 71% of the needles required were dispensed to clients based on NESI data. Minimal deficit was found when analysing local data on NEO 2015/16, but despite overall good provision 46% of users may still not be receiving enough injecting equipment.. • 19% of NESI respondents reported injecting with equipment used by someone else in the last, and 20% had reused the same needle/syringe more than 5 times before discarding it in the last six months (NESI 2015-16).

Service access • The majority (83%) of people access IEP services at pharmacies which currently only provide ‘general’ services i.e. not other harm reduction interventions such as take home naloxone and blood borne virus testing (NEO 2015/16). • The location of IEP service outlets corresponds to areas where most IEP clients reside.

52 7.0 Blood-Borne Virus Testing, Care and Treatment

7.1 Blood-borne virus prevalence The Needle Exchange Surveillance Initiative (NESI) 2015-16 reported the hepatitis C antibody (HCV Ab) prevalence of people attending injecting equipment provision (IEP) services in Edinburgh as 48%. This is a rise of 7% from 41% in 2013-14 (Table 7.1), although lower than the national average of 58%. People in Lothian who had been in prison in the last six months were found to have a higher hepatitis C antibody prevalence of 63% and the proportion of people with recently acquired hepatitis C (HCV) infection has risen from 1.2% in 2010 to 3% in 2015. HIV prevalence reported by NESI 2015-16, was low at 0.6%.

Table 7.1: Prevalence rates of positive hepatitis C antibody in people who inject drugs attending IEP services in Lothian based on NESI survey 2015-16 Year 2009-10 2013-14 2015-16 Lothian prevalence of Hepatitis C 33% 41% 48% antibodies in people who inject drugs

7.2 Blood-borne virus testing in current injectors attending injecting equipment provision sites Of Lothian respondents to NESI 2015-16, 59% reported being tested for hepatitis C in the previous 12 months (vs 48% nationally) with the majority tested by GPs or in drug treatment services (Table 7.2). In Lothian, GPs are paid to test high risk individuals through a Local Enhanced Service.

Table 7.2: Location of last HCV test based on NESI 2015-16 Location of last test Number tested (percentage) Drug Treatment 138 (32%) GP 112 (26%) Hospital 82 (19%) Prison 75 (18%) Other 19 (4%) Total 426 (100%)

A higher proportion of people who had been in prison in the last six months and people who were homeless were tested for HCV in the last 12 months, 78% and 76% respectively. This may be partially attributed to additional resources for testing invested into the prison and homeless sectors since 2012 by the Hepatitis C Managed Care Network. Overall, 8% reported never having been tested.

53 7.3 Blood-borne virus testing for people receiving opioid substitution therapy Local and national recommendations are that all people who currently inject drugs are tested at least annually or more frequently if at very high risk [26]. In Edinburgh, 258 individuals were newly registered, via SMR25a registration, with specialist addictions services between April 2015 and March 2016. Community Health Index (CHI) numbers were available for 244 individuals and SMR25a records were linked to the NHS Lothian laboratory testing data (Figure 7.1). If testing was performed out with the board area the local laboratory may not have had this data so some records may have been missed.

For the cohort of 244 CHI linked records:

• One hundred and twenty eight (52%) people had a negative HCV Ab test prior to April 2015 and were eligible for retesting in the following year by March 2016. Fifty nine (46%) of those individuals were not tested in the following year. • Thirty five (14%) people did not have a negative or positive result recorded on the local NHS Lothian laboratory database prior to April 2015. Some may have had a test out with NHS Lothian or had a test unlinked to CHI number in this time however the majority would have been eligible. Fifteen (43%) were not tested in the following year. • Eighty one (33%) people had a positive HCV Ab test recorded on the laboratory database prior to April 2015 and it is unclear what proportion would have required testing in the following year. Forty one (51%) people received tests in the following year with many likely due to follow up or confirmatory testing. • A total of 137 tests were performed with some of these being repeat testing on the same individuals. Most (51%) tests were done by the community BBV team, Royal Infirmary of Edinburgh (RIE) and Western General Hospital, 15% of tests were done by GPs, 15% by the Edinburgh Access Practice and 5% by third sector agencies. This suggests some ongoing engagement of patients with GPs while in specialist care for addictions but it is disappointing that more tests are not being done by specialist services themselves.

54 Figure 7.1: Data linkage between SMR25a CHI numbers and NHS Lothian laboratory testing data

55 7.4 Blood-borne virus testing in those registered with GPs via drug misuse National Enhanced Service (NES) Data provided from general practice looked at 3808 individuals (472 currently injecting and 2024 having previously injected) who had at least one appointment with one of 92 GP practices currently contracted via the drug misuse National Enhanced Service (NES) throughout Lothian in 2016. Of these individuals, 707 (18.6%) had been tested, 705 (18.5%) declined testing for HCV and 2396 (62.9%) had not been tested in 2016. Of 472 who reported current injecting, 133 (28%) were tested, 48 (10%) declined testing and 291 (62%) were not tested. Those in older age categories over 40 years were more likely to decline testing. Of the total 707 that received a test, 73 (10%) were positive for HCV antibody and 22 (3%) were PCR positive.

Between January and December 2016, 212 new patients who newly registered with the drug misuse NES scheme were linked to laboratory testing data (Figure 7.2).

For the cohort of 212 CHI linked records: • One hundred and twelve (53%) people had a negative HCV Ab test prior to January 2016 and were eligible for retesting in the following year by December 2016. Forty nine (44%) of those individuals were not tested in the following year. • Seventy four (35%) people did not have a negative or positive result recorded on the local NHS Lothian laboratory database prior to January 2016. Some may have had a test out with NHS Lothian or had a test unlinked to CHI number in this time however the majority would have been eligible. Fifty eight (78%) were not tested in the following year. • Twenty six (12%) people had a positive HCV Ab test recorded on the laboratory database prior to January 2016 and it is unclear what proportion would have required testing in the following year. Forty one (51%) people received tests in the following year with many likely due to follow up or confirmatory testing. • Ninety three (44%) people were tested for HCV in 2016. The majority of testing was carried out by GPs (Table 7.3)

Table 7.3: Location of testing for new patients registered with drug misuse NES in Lothian based on laboratory data Location of test Number tested (Percentage) GP 58 (62%) Hospital 13 (14%) Community BBV or RIDU 9 (10%) Dry Blood Spot Testing 8 (9%) Prison 4 (4%) Other Health Board 1 (1%) Total 93 (100%)

56 Figure 7.2: Data linkage between new drug misuse NES registrant CHI numbers and NHS Lothian laboratory testing data

7.5 Hepatitis C treatment The total number of people in Lothian (including those who do not inject drugs) being treated for HCV has increased from 172 in 2013/14 to 215 in 2016/17. This reflects the availability of more effective treatments with fewer side effects and shorter duration.

57 Table 7.4: Number of patients commencing HCV treatment in Lothian compared to Scottish Government target Number of patients commencing Year Government target hepatitis C treatment in Lothian 2013/14 145 (including 34 in prison) 172 2014/15 178 (including 38 in prison) 179 2015/16 235 (including 35 in prison) 215 2016/17 228 (including 29 in prison) 215

Of the NESI 2015-16 cohort in Lothian, 33 of 100 individuals (33%) with self reported positive HCV status received treatment. Sub analysis of this data for homeless people and people who report being in prison in the last six months showed lower rates of treatment in these groups (3/20 (15%) and 7/38 (18%) respectively) although the numbers surveyed were small.

Attrition rates from testing, referral and treatment for HCV Nationally across Scotland, the population infected with HCV see large drop offs from diagnosis, attendance at clinic through to successful treatment (Figure 7.3) [45,46].

Figure 7.3: National Hepatitis C (HCV) Care Cascade

Of 279 in the Lothian NESI 2015-16 cohort receiving an HCV test, 142 (51%) were found to be HCV antibody positive. Of those 142 who tested positive, 59 (42%) were aware of previous infection with HCV.

58 Data from the HCV data base at the Royal Infirmary of Edinburgh (RIE) was used to estimate attrition rates from referral through to starting treatment (Figure 7.4). The data base includes patients treated at RIE and outreach clinics including the Edinburgh Access Practice. Data between 1st March 2014 and 31st December 2016 was extracted for 208 Edinburgh residents that had been coded as current (within the last 12 months) or ex- (more than 12 months ago) injecting drug users. It is likely that coding was inconsistent and many people who inject drugs were not recorded as such on the database. Of 208 individuals referred for treatment, 102 (49%) attended clinic. Of those that attended, 44 (43%) started treatment.

Figure 7.4: Piot-Fransen Model of attrition rates for HCV referral and treatment in a cohort of 208 current and ex- injecting drug users in Edinburgh as coded on Royal Infirmary of Edinburgh database

A comparison of attrition rates between the Royal Infirmary of Edinburgh and Edinburgh Access Practice shows lower attrition at the Edinburgh Access Practice (Table 7.5). Patients attending the Edinburgh Access Practice are mostly homeless and lower attrition probably reflects on-site case finding, testing, assessment, treatment and support, plus, flexible arrangements for access.

59 Table 7.5: Numbers of people who inject drugs referred to clinic for HCV, attending clinic and treated for HCV at Royal Infirmary of Edinburgh (RIE) and Edinburgh Access Practice (EAP) 1st March 2014 until 31st December 2016. EAP RIE Total

Percentage Percentage Percentage Referred 80 128 208 Loss Loss Loss Attended First 59 26% 43 66% 102 51% Appointment Started 26* 56% 18** 58% 44 57% Treatment *14 Sustained Virological Response, 2 relapsed, 1 incomplete treatment, 3 waiting on 3/12 post-treatment response, 6 currently on treatment **6 Sustained Virological Response, 1 relapsed, 2 incomplete treatment, 5 waiting on 3/12 post treatment response, 1 currently on treatment, 3 outcome not recorded

An audit was conducted in 2011, to retrospectively trace those who had ever tested positive for HCV but: (1) had never been referred to the hospital clinics; (2) had been referred but had never attended clinics; and (3) had attended once at hospital clinics but then been lost to follow up after initial assessment. Of the original 3,819 patients ever identified as hepatitis C positive, 2,469 had died, moved away or become PCR negative. Of the remaining 1,350, 270 were successfully matched for CHI (meaning that they were registered with a Lothian GP) and of these 201 had already been re referred back into the hospital system. The remaining 69 received a letter inviting them for review at their GP practice with the hepatitis C specialist nurse, but only two people attended. This exercise indicated that retrospective follow up by letter of individuals previously HCV positive is very labour intensive and unlikely to yield high pick up rates. However, other options such as prospective follow up through direct contact with outreach workers and through existing service contacts is worth exploring.

7.6 Hepatitis B vaccination Of 475 people responding to the NESI survey 2015-16 in Lothian, 282 (59%) reported receiving three or more doses of hepatitis B vaccine, 57 (12%) reported receiving two doses and 19 (4%) reported receiving one dose. Sixty six people (14%) reported receiving no doses of vaccine and 51 (11%) were unaware of how many doses they had received.

60 7.7 Key findings: Blood-borne virus testing, care and treatment

BBV testing and treatment • HCV antibody prevalence in people who inject drugs in Lothian has increased in the past few years and is currently at 48% (NESI 2015-16). There is a significant rise among recent onset injectors. • The majority of testing is done in specialist drug treatment services, by the BBV testing team, and by GPs (NESI 2015-16, local data) • Eighty nine people (55%) of 163 who registered for OST and were eligible for testing received BBV testing in the year since last test (SMR25a/HCV database linkage). • Seventy nine people (42%) of 186 who were newly registered with the primary care drug misuse National Enhanced Service received testing for HCV in the year since last test (Drug Misuse National Enhanced Service data/HCV database linkage).

Attrition rate of people who inject drugs from diagnosis to treatment of BBVs • 59% of current injectors were tested for HCV in the last year (NESI 2015-16) • Of 208 people who inject drugs (current and ex- injectors) referred for treatment at the Royal Infirmary of Edinburgh, 102 (49%) attended clinic and of those 44 (43%) started treatment (RIE Database). • Losses between referral and successful treatment are less for patients at the Edinburgh Access Practice where patients may not have to travel for treatment and they are surrounded by both multi-disciplinary generalist and specialist workers who can support their treatment pathway. (RIE Database)

61 8.0 Take Home Naloxone

8.1 Population characteristics For the financial year (FY) 2016/17, 721 take home naloxone (THN) kits were issued in the City of Edinburgh. Of the 323 individuals who received naloxone where age and gender were known, 203 (63%) were male with a mean age of 38 (range 16 to 66) and 120 (37%) were female with a mean age of 39 (range 17 to 66). The distribution of residence of people issued with THN is similar to the distribution for injecting equipment provision and drug related deaths (Figure 8.2).

8.2 Service delivery THN is mainly supplied by NHS and third sector colleagues working in Tier 2 and Tier 3 services but work is ongoing to provide THN across all tiers of harm reduction services (Table 8.1). In Edinburgh, there has been a steady increase in naloxone issued in the community from 303 kits in FY 2012/13 to 721 kits in FY 2016-17. The Needle Exchange Surveillance Initiative (NESI) 2015-16 found that of 475 respondents, 242 (51%) had ever been prescribed naloxone.

Table 8.1: Take home naloxone supply Tier Providers Tier 1- Health and − Police custody suite (St Leonard’s) social services − Scottish Ambulance Service (under development) that interface − Regional Infectious Diseases Unit, Western General with drug and Hospital alcohol care − Social work at Bonnington Rd. (under development) Tier 2 – Low − Recovery hubs in individual localities threshold open − Harm Reduction Team (Spittal St Centre) access services − Needle Exchange Outreach Network (NEON) bus − Women’s clinic at Turning Point Leith − Edinburgh Access Practice (EAP) for homeless people Tier 3– − Harm Reduction Team (Spittal St Centre) Structured − Recovery hubs in individual localities community- − Low threshold medication programme (LTMP) based services − Edinburgh Access Practice (EAP) for homeless people − Drug Treatment and Testing Order (DTTO) team. − Drug Misuse National Enhanced Service (NES) − HMP Edinburgh addictions services Tier 4 – Specialist − Ritson Clinic, Royal Edinburgh Hospital residential − LEAP, services − Toxicology, Royal Infirmary of Edinburgh

In FY 2016/17, as with previous years, most naloxone was issued to the user (592, 82%). Kits are also issued to support workers (97, 13%) and family and friends (32, 4%). The 2015 legislative changes that have allowed third sector supply have enabled more family members to access naloxone (Table 8.2).

62 Of the 721 kits issues in Edinburgh, 328 (45%) are recorded as ‘first supply’ with 336 (47%) as ‘repeat supply’ and of these, ‘lost kit’ is the main reason for issue (146, 20%), with 14% damaged or expired. Use for overdose across Lothian as a whole has increased from 35 instances in 2012/13 to 147 instances in 2016/17. However for the city of Edinburgh there has been a decrease from 118 instances in 2015/16 to 83 instances in 2016/17. Data from the last 2 years indicates a seasonal trend with more kits used for overdose in the summer months.

Table 8.2: Naloxone supplied by reason for issue, City of Edinburgh FY 2016/17 Reason for issue Kits supplied First supply 328 Spare supply 57 Not known 0 Repeat supply 336 Lost kit 146 Used for overdose 83 Expired 78 Damaged 24 Confiscated 3 Not known 2

There is variation in the number of kits supplied at different sites: the Harm Reduction Team at Spittal Street Centre provided 23% (163) of all kits, NE Hub provided 14% (104), NW Hub provided 13% (97), Drug Treatment & Testing Order (DTTO) provided 10% (71), the Edinburgh Access Practice provided 9% (62) and the Regional Infectious Disease Unit/blood borne virus team provided 19 kits in 2016/17. In HMP Edinburgh, flyers are distributed to highlight THN training and if they complete the training a THN kit will be placed in their property by the addictions team on liberation. The number of kits issued from HMP Edinburgh has increased from 54 in FY 2012/13 to 142 in FY 2015/16. Of the 70 people surveyed in NESI 2015-16 who had been in prison in the previous six months, 37 (52%) had been provided with THN and of these, 19 (51%) had received THN from the prison.

There is also variation by patient address (Table 8.3). Data for 2016/17 suggest that individuals resident in the North West locality are in receipt of one THN kit per person at risk, whereas for people resident in the South East locality the ratio is 0.2 kits per injector.

63 Table 8.3: Take home naloxone issued City of Edinburgh locality

Locality Number of people THN issued to THN issued per injecting drugs (from people in locality ‘injector’ NEO 2016 ‘regular postcodes (% of attendees’) total Lothian issues) North West 114 115 (16%) 1 North East 398 151 (21%) 0.4 South East 901 180 (25%) 0.2 South West 262 101 (14%) 0.4

A major gap in delivery is primary care. In Edinburgh, up to 80% of opioid substitution therapy (OST) is delivered by GPs through the drug misuse National Enhanced Service (NES) and patients collect prescriptions from community pharmacies. However, currently there is very little THN prescribed in either of these locations, in contrast to other locations in Scotland, such as Glasgow where THN training and kits are delivered primarily by community pharmacists. General practices are beginning to prescribe THN (Figure 8.1) but numbers of kits provided are still very low.

Figure 8.1: Monthly prescribing of naloxone for Lothian GP practices in the drug misuse National Enhanced Service (NES) from January 2016 to February 2017 (excluding stock orders)

30

25

20 Practices prescribing Number of Naloxone Practices/ 15 Prescriptions Number 10 Prescribed

5

0 Jul-16 Jan-16 Jan-17 Jun-16 Oct-16 Apr-16 Feb-16 Feb-17 Sep-16 Dec-16 Aug-16 Nov-16 Mar-16 Mar-17 May-16 Date

64 Recent discharge from hospital with an overdose is a risk factor for DRD [47,48]. However, provision of THN in hospital settings such as A&E departments and inpatient wards remains a challenge. Likewise, although Tier 1 services such as police custody are already providing THN, and the Scottish Ambulance Service is developing plans to do so, other services such as housing/homelessness and social work distribute very low numbers at this time.

8.3 Naloxone use by the Scottish Ambulance Service Based on national data provided by the Scottish Ambulance Service (SAS), between 2008 and 2015, the number of attendances for suspected overdose ranged from 185 to 242 per year. Naloxone was administered on average at 53% of these attendances. Data gathered locally by SAS in Lothian is significantly higher at 431 attendances in 2016. This is likely to be due to different reporting and coding practices for SAS locally and nationally.

8.4 Key findings: Take home naloxone

• Take home naloxone is available through a wide range of outlets across Edinburgh, the number of kits issued and services issuing kits is increasing, and THN use for reversal of suspected opioid overdose is also increasing.

• There is variation in distribution between settings and localities: settings that need to be developed for THN supply include A&E departments, hospital inpatients, SAS, general practice and community pharmacy; the SE, NE, and SW localities have significantly lower rates of kit/injector than NW and an improvement approach is needed to ensure equitable access across the city.

65 Figure 8.2: Map of patients who received naloxone between April 2014 and September 2016 based on postcode district

66 9.0 Accident & Emergency

9.1 Patient characteristics In the period August 1st 2015 to July 31st 2016, there were 1223 admissions for ‘psychoactive substance use’ through the four A&E departments in NHS Lothian; this represented 989 unique individuals. The number of admissions per month varied from 124 in August 2015 to a low of 72 in February 2016, indicating a seasonal influence on admission numbers. There was an average of 102 admissions per month. The cohort of possible injecting drug users included 1034 admissions. The following data relates to this cohort.

Ethnicity was mainly white Scottish/British and 70% of the cohort was male with an average age of 35. Age was normally distributed (Figure 9.1).

Figure 9.1: Population pyramid for individuals in the cohort – by age group and sex

Of the 820 individuals within this cohort, 726 (88%) were resident in NHS Lothian, with 48 having a ‘Not Known’ health board of residence, and 17 with ‘No Fixed Abode’.

There were 635 (61%) admissions for opioid use from 514 individuals; 75 (7%) admissions associated with cocaine use from 70 individuals; 103 (10%) admissions associated with stimulant use from 92 individuals; and 292 (28%) admissions with multiple/other psychoactive substance use from 255 individuals, with an average of 25 admissions per month. Some admissions had multiple types of drug use coded which could account for inflated numbers (Figure 9.2).

67 Figure 9.2: Total admissions for each diagnosis (contains multiple admission counts for admissions with several different diagnoses)

Of the 1034 admissions for possible injecting drug use, 113 (11%) had a recorded diagnosis of hepatitis (type unspecified) in the discharge summary and 16 (2%) a diagnosis of cellulitis. Codes for other types of skin and soft tissue infection were not searched for. This may account for the much higher reported rates of severe soft tissue infection in the NESI 2015-16 survey where of 475 people surveyed, 22% had a severe soft tissue infection in the last year and 76% sought medical/nursing advice [1]. Of those that sought medical advice, 64% went to A&E and 32% to see a GP.

9.2 Service utilisation The majority (739, 72%) of admissions for possible injecting drug users were to the Royal Infirmary of Edinburgh, with 228 (22%) admitted to St John’s Hospital at Howden, 64 (6%) to the Western General Hospital and 3 (0.3%) to the Royal Edinburgh Hospital. The total length of stay, not including time spent in A&E, was less than 24hrs for 45% of admissions.

The most common registered GP practice was the Edinburgh Access Practice (n=84, 10%), with 44 (4%) individuals having no registered GP practice. The next four most common registered GP practices were Muirhouse Medical Group (24, 2%), Sighthill

68 Green Medical Practice (23, 2%), Wester Hailes Medical Practice (22, 2%) and Leith Mount Surgery (18, 2%).

9.3 Comparison of 2015/16 admissions with the 2013-15 ‘NPS’ cohort The demographics from the two cohorts are similar and as expected from the methodology and timing of the 2013-15 ‘NPS’ cohort, there are much higher rates of Novel Psychoactive Substances (NPS) use [2] (see section 3.0 Methods). There are also much higher rates of skin and soft tissue infection: 39 of 562 (7%) with cellulitis and 36 of 562 (6%) with abscess/furuncle/carbuncle. Again this is expected due to the increase in chaotic injecting practices at that time. Both cohort admissions tended to be later in the day or early morning, but there was no seasonal trend for the 2013-15 ‘NPS’ group and admission increased to a peak in April 2015 and thereafter declined – perhaps due to the initial local ban on the sale NPS.

Length of stay of greater than 24hrs was higher in the 2013-15 ‘NPS’ cohort (55% vs 44%). A greater number of individuals in the 2013-15 ‘NPS’ cohort had no registered GP (5.9% vs 4.2%) and 15% vs 10% were registered at the Edinburgh Access Practice for homeless people.

9.4 Older drug users Older drug users may be more vulnerable to bacterial infections and statistics on the botulism outbreak in Scotland in 2014/15 show that two-thirds (26, 67%) of identified cases occurred among males and that the median age of individuals affected was 42 years (range 24-56 years) [38].

69

Map of patients from TRAK data with inpatient admission through A&E in relation to psychoactive Figure 9.3: substance use from 1st August 2015 to 31st Jul 2016

70 9.4 Key findings: Accident & Emergency

• From August 1st 2015 to July 31st 2016 there were 1223 admissions for psychoactive substance use across the four A&E departments in NHS Lothian; an average of 102 admissions per month. Of these 78% occurred in Edinburgh, and there were 635 (61% of the total) admissions for opioid use from 514 individuals.

• 55% of admissions stay in hospital for more than 24 hours.

• The number of admissions for cellulitis has decreased since two years ago where there was a rise in NPS use, but it is likely that more admissions would be identified if additional codes were used for abscess/furuncle/carbuncle and sepsis/septicaemia/bloodstream infection. It is notable that the NESI 2015-16 data shows that 22% of drug users had a severe infection in the last year and that 67% of these attended A&E.

• Of the 1034 admissions for possible injecting drug use, 113 (11%) also had a recorded diagnosis of hepatitis.

71 10.0 Criminal Justice System

There are higher levels of health morbidities and less engagement with health services amongst those entering the criminal justice system than in the general population [49]. In 2012, responsibility for prisoner healthcare was transferred from the Scottish Prison Service (SPS) to local NHS boards, and, since 2014, responsibility for the health of people in police custody also sits with NHS boards. This situation provides an opportunity to improve equity of access to harm reduction interventions and to improve continuity of care as people move from the community into the criminal justice system and back to the community.

10.1 HMP Edinburgh HMP Edinburgh receives offenders predominantly from Lothian and Borders but also from across Scotland. The capacity is 870 prisoners and on average 900 offenders are held per day of which up to 100 may be women.

The Scottish Prison Service (SPS) Prisoner Survey 2015 involves all prisoners in Scottish establishments and in 2015 the response rate was 55%: 92% male and 8% female; 80% sentenced and 20% on remand. The survey response on drug use and drug treatment at HMP Edinburgh were not significantly different from national rates.

In HMP Edinburgh, 45% of people report being under the influence of drugs at the time of their offence, 44% percent report having used illegal drugs in prison, 23% in the last month, 6% had ever injected in prison and 2% had ever injected in the last month. Of these 4 individuals admitted to sharing works and nationally this figure was 48; 82% of all those that reported injecting in the last month. Heroin was the most commonly reported drug injected.

Reported drug use is supported by the addiction prevalence testing that is conducted across all Scottish prisons annually. Of 33 prisoners tested on reception at HMP Edinburgh in November 2016, 76% (25) tested positive for illegal drugs: 14 (42%) for cannabis, 13 (39%) for benzodiazepines, 13 (39%) for opiates, six (18%) for methadone, four (12%) for buprenorphine and nine (27%) for cocaine. On liberation, of 51 people tested, 16 (31%) tested positive for illegal drugs: two (4%) for cannabis five (10%) for benzodiazepines, four (8%) for opiates, two (4%) for methadone and 10 (20%) for buprenorphine.

Further information collected from the prison healthcare electronic system VISION between 1st January and 31st December 2016, also indicates high rates of drug use, and although the numbers are smaller than for males (48 females vs 379 males) it is notable that female prisoners report higher rates of sharing needles and higher rates of abnormal injection sites (Table 10.1) [50].

72 Table 10.1: Self-reported data by the prisoner in relation to drug use from males on admission and females transferred into HMP Edinburgh between 1st January 2016- 31st December 2016 from VISION Male Female Total Number 379 48 Misuses Drugs 71% 79% H/O sharing needles 3% 12% Injecting drug user 9% 23% O/E Injection Site Abnormal 0.5% 8% Previous injecting drug user 5% 8%

When asked about drug treatment at HMP Edinburgh, 22% of respondents report receiving treatment for drug use prior to prison, 35% report assessment for drug use on admission, 26% report being given the chance to receive treatment for drug use in prison and15% report being prescribed methadone.

The main routes into treatment in HMP Edinburgh are: (1) screening at admission; (2) referral by prison staff; (3) self referral. NHS Lothian prescribing data (August 2016) indicates that 21% of prisoners receive opiate substitution therapy (OST) (Table 10.2)

Table 10.2: Number of prisoners receiving OST at HMP Edinburgh Total Prison Number on Number on Number on Population Methadone Suboxone Subutex 855 171 (20%) 11 (1%) 0

In addition to OST, prisoners at HMP Edinburgh receive a range of psychological treatment and harm reduction interventions delivered by the NHS Addictions Healthcare Team and the third sector organisation Change Grow Live (CGL).

Testing for blood-borne viruses (BBV) is offered to all prisoners on admission on an ‘opt out’ basis and specialist BBV nurses attend the prison weekly to supervise treatment and ensure prisoners are linked into community services on release.

10.2 Prison through care The City of Edinburgh Council, Midlothian Council and NHS Lothian commission Change Grow Live (CGL) to provide the Edinburgh and Midlothian Offender Recovery Service (EMORS). The service provides voluntary through care services for people returning from prison to Edinburgh or Midlothian after serving a sentence of less than four years, and aims to ensure continuity of health and social care in the community, including addictions and harm reduction services. People released after serving a sentence of four years or longer, receive an integrated offender management approach led by Criminal Justice Social Work.

73 A high proportion of people interviewed as part of the NESI survey 2015- 16 had ever been in prison (81%) and 15% had been in prison within the last six months. Of these, 10% were aged 25 or less and 33% were aged over 35. This is a younger age demographic compared to the general injecting population where 4% were aged 25 or less and 51% aged more than 35. For those who had been in prison, injecting behaviours were classed as more “risky” based on frequency, especially those who were homeless with 64% reporting injecting daily or more compared to 54% overall.

All of the prisoners interviewed in Lothian as part of the user consultation (Section 13.0) had experienced prison before and highlighted that the through care arrangements that were being put in place for their forthcoming liberation gave them more hope than they experienced in the past. However, it is recognised that continuity of care can be a challenge beyond release especially because GP registration can lapse and it can be difficult for some people to re register [51]. The Edinburgh Access Practice has a dedicated nurse who links with HMP Edinburgh to ensure prescriptions are transferred into the community for those who are not registered with a GP.

In addition to the EMORS service and Criminal Justice Social Work other services that provide through care include SPS Through Care Support Officers, Job Centre Plus and third sector organisations Passport, SHINE, Foursquare & New Routes. The response is coordinated through the multi agency through care service, MATS.

Take Home Naloxone (THN) is promoted to all prisoners at HMP Edinburgh. Currently there is no prison based IEP scheme in HMP Edinburgh or in any other establishments across Scotland. However, there are discussions underway to look at issuing “one hit kits” on liberation from Edinburgh along with THN.

10.3 Police custody St Leonards is the capital city’s custody area and has capacity for up to 48 men and women at one time. It is the busiest police custody suite in Scotland. The Thematic Inspection of Police Custody Arrangements in Scotland, 2014 examined a sample of 310 custody records nationally and 68% of detainees were classed as vulnerable because of medical, mental health or substance use issues [52].

The ADASTRA database at St Leonards was searched for the period 1st August 2015 to 31st July 2016. There is poor coding for 'Drug Type', 'Frequency' and 'Route’ hence the majority of records were found through free text search. As a result, this data is unlikely to be entirely representative of drug users in police custody and is almost certainly an underestimate.

74 Of 430 people identified, 86 (26%) were female and 344 (74%) male. Of the women, 14 (16%) were aged 16-24 years and 39 (46%) were aged 25-34 years; for men the figures were 34 (10%) and 160 (46%) respectively.

Figure 10.1: Age and gender of police custody detainees associated with drug use st st between 1 August 2015 and 31 July 2016 based on ADASTRA Excludes those with no recorded CHI number (13% of cohort)

Male Female

45+ 38 6

35-44 112 27

25-34 160 39 Group Age 16-24 34 14

200 150 100 50 0 50 Number of Cases

Recorded drug use was identified by a free text search for 499 unique admissions. Heroin was the most frequently recorded drug (n=350, 70%) followed by ‘other opioids’ (n=315, 63%), benzodiazepines 312 (62%), methadone (n=163, 33%), and crack (n=95, 19%). A history of injecting drug use was identified in 21% of admissions.

Currently there is 12 nursing staff employed within the custody suite that provide treatment for the prevention of withdrawals from alcohol, opiates and benzodiazepines.

Scottish guidelines for the provision of injecting equipment recommend disposal of injecting equipment on admission [10]. In some areas e.g. Tayside, a needle replacement service is offered although this is not yet in place in Edinburgh. There is some evidence to indicate that police custody suites in Scotland may be able to reach a group of injectors who are not in contact with other services and feedback from custody healthcare staff in St Leonards and the limited demographic data from ADASTRA supports this [53]. The EMORS service is commissioned to provide arrest referral in Edinburgh and Midlothian. However arrest referral support in police custody to date has been limited to short term pilot projects such as the Sunday Choices programme provided by SACRO [54].

75 Table 10.3 Recorded drug use by substance type, of police custody detainees associated with drug use based on ADASTRA from August 2015 to July 2016 Free text substance route Recorded Substance Route (not necessarily Recorded Frequency of Drug Use in reference to stated drug) Drug Type 5-6 3-4 1-2 2-3 *identified either by % of 'Inject' Days Days Days Days recording in dataset, Cases Total i.v Oral Smoke Snort Daily 'IVDU' Per Per Per Per or free text search of Cases Week Week Week Month drug name Benzodiazepines 312 62% - 10 - - 97 7 1 1 - 1 Cannabis (Herbal) 19 4% - - 1 - 4 - - - - - Crack 95 19% - - 1 - 28 1 - - - - Heroin 350 70% 11 - 4 - 130 12 1 - - - Methadone 163 33% - 5 - - 47 3 - 1 1 - NPS (Synthetic Cannabinoid) 15 3% - - - - 5 - - - - - Other Drugs 1 0.2% - 1 - - 0 - - - - - Other Opiate Or Opioid 315 63% - 2 - 1 107 1 - 1 - 1 Total Unique Cases (may use multiple 499 drugs) *Note: 'Drug Type', 'Frequency' and 'Route' are poorly coded, hence the majority of records being found through free text search. As a result, this data is unlikely to be entirely representative of drug users in police custody.

76 10.4 Drug Treatment and Testing Order (DTTO) The Drug Treatment and Testing Order (DTTO) Team is a statutory service. A DTTO is an order that courts can impose on adults if it is assessed that their offending is related to drugs. In Edinburgh there are two DTTO teams. One deals with people charged with serious or high levels of offending and this group tend to be chronically dependent on drugs with many health problems. The other team is the Early Intervention Team that works with individuals starting to offend because of their drug use. This team often deal with women whose substance use is generally a response to trauma and also both the younger and much older (e.g. 60+) populations of drug users.

Once a person has agreed to treatment they are provided with an intensive package of care by a multi-disciplinary team which includes a doctor, a social worker and an addictions worker. The doctor will prescribe OST within a month of the person entering the service and regular meetings are set up so that the service user is in contact with their treatment team at least 2-3 times per week. If they are an injecting drug user the aim is to eliminate injecting within the first six months of contact. The main DTTO team has the capacity to work with approximately 120 Edinburgh and Midlothian service users and the Early Intervention Team 20. All nurses are trained in wound care, a specialist BBV Nurse attends weekly for testing and vaccinations and safer injecting advice can be given. Injecting equipment is not provided because it would be in conflict with the court orders to reduce the use of illegal drugs and service users can be drug tested up to twice/ week.

10.5 Willow The Willow Service is a partnership between NHS Lothian, City of Edinburgh Council and SACRO to address the social, health and welfare needs of women in the criminal justice system. Willow aims to:

• Improve women’s health, wellbeing and safety. • Enhance women’s access to services. • Reduce offending behaviour.

Services are offered to women aged over 18, resident in Edinburgh or returning to Edinburgh from custody. Women participate in a programme of group work and one to one work, two days a week for six to nine months. The programme is delivered by a multi-disciplinary team consisting of criminal justice social workers, criminal justice support workers, a nurse, a psychologist and a nutritionist. A high proportion of women supported by Willow have substance use issues and women are mostly referred to their local recovery hubs, Spittal Street Centre or GPs for addictions treatment. There is on site provision of BBV testing, sexually transmitted infections testing, sexual health advice and certain contraceptive options, including emergency contraception. There are strong links between Willow, Chalmers Sexual Health Centre and the Edinburgh Access Practice, and the nurse is able to use their

77 premises to perform examinations or procedures as Willow does not have a clinical room. The current nurse is naloxone trained so there is potential to explore if it would be an option for THN to be distributed as it is not provided currently.

Oral health advice is provided at Willow with referrals to Lauriston Dental Clinic or Spittal Street for further treatment. A welfare rights adviser from the City of Edinburgh Council also does outreach to the Willow project to support the women.

10.6 Key findings: Criminal justice system

Patient characteristics • 81% of injecting drugs users in Edinburgh have been in prison at some point and 15% of have been in prison in the last 6 months (NESI 2015-16) • Those leaving prison in the last six months have a younger age demographic and are more likely to be homeless and involved in high frequency of injecting than the general drug injecting population (NESI 2015-16) • 74% of those admitted to police custody are male and 46% are aged 25-34 (ADASTRA) • There is a significant crossover of “frequent attender” patients attending A&E and those being detained in the custody suite (PACT)

Drug use • 9% of males and 23% of females reported being injecting drug users on admission to HMP Edinburgh and 20% tested positive for opiates. • 63% of those admitted to police custody on drug related offences reported use of opiates of which one third reported injecting drug use. 63% also reported use of benzodiazepines (ADASTRA)

Services • 21% of prisoners in HMP Edinburgh are receiving OST (HMP Edinburgh Data) • Experiences of through care are reported to have improved since the introduction of Through Care Support Officers. • Police custody provides an opportunity to reach those whose healthcare needs are largely unmet by mainstream healthcare services and who may not be engaged with services in the community. • Low threshold engagement through arrest referral programmes provides a vital link to services for those who are unlikely to access services in the community. • Willow provide an important service and could consider provision of take home naloxone and IEP ‘one hit kits’ to women that need them.

78 11.0 Social Services

A total of 38 individuals were identified on the City of Edinburgh Council homeless data base as both homeless and an injecting drug user. There is no routine or obligatory question on the current system so this is likely to be a significant underestimate and therefore not representative of the homeless population of drug users in the City of Edinburgh.

Of the 38 individuals identified, the ethnicity of most was ‘white Scottish’, with three ‘white other’ and one ‘mixed’. There were eight women and 30 men. Their ages ranged from 28-53 with a mean age of 35.

The reasons for homelessness of the women on the database were mainly due to violence: ‘violent dispute with partner’ (3/6); ‘violent dispute with parents’ (1/6); and ‘non domestic violence’ (1/6) were all cited reasons. The main reasons for men were: ‘friends/relatives no longer able to accommodate’ (12/30); ‘discharge from prison’ (7/30); loss of previous accommodation for some reason (8/30); and ‘non violent dispute with partner’ (2/30).

The source of income for 32 (84%) people was benefits, one person had no income and one person was self employed. Thirty (79%) were in temporary accommodation and the total time for these people in temporary accommodation was 4,390 days, with the average time per person of 146 days.

Of the 38 individuals on the database, 32 (84%) were currently using heroin and five of the remaining six were using cocaine or crack cocaine. Eleven of the 38 people (29%) were on a script for methadone and several of these were taking other drugs such as gabapentin, diazepam or mirtazipine, either on prescription or from the street. The outcomes recorded were: ‘housed’ 5/38; ‘entered into long term care e.g. hospital, prison’ 2/38; ‘lost contact’ 9/38; and the remaining 21 either had nothing recorded under outcome or were classified as intentionally homeless or not homeless.

11.1 Inclusive Edinburgh Inclusive Edinburgh is a multi agency approach to developing effective services for people with complex housing, health and social care needs. It has senior level buy- in across the Police, NHS Lothian, Health and Social Care, Housing, Criminal Justice and relevant parts of the Third Sector. There are a number of work streams that present significant opportunities to address the needs of people who are injecting drugs. The most relevant include:

79 • Inclusive Homelessness Service Inclusive Edinburgh is developing an integrated service for people who are homeless with complex care needs. This will bring together the Edinburgh Access Practice, the Access Point and the Third Sector into a single service for this group of people. Many of these people will include homeless people who are people who inject drugs. The service will use evidence based approaches including the development of a psychologically informed environment. Currently the Edinburgh Access Practice provides opioid substitution therapy (OST) to a significant proportion of their patient group.

• Single Case Coordinator Test of Change People with complex care needs may need to access a range of services if their needs are to be met effectively. As a result this can be challenging and complex for those trying to benefit from this broad range of services. A test of change is underway to establish a Single Case Coordinator to both deliver and facilitate access to these services. This approach is recognised good practice and is in line with other approaches to meet the needs of this group across the country. Further information is available at http://meam.org.uk/.

• Measuring success Indicators are being developed and tested for services working with people with complex care needs. There is significant evidence that this group of people will require more time to build trust and engage with services prior to achieving change. Alongside this, care plans will need to be broad ranging and reflect client need and aspirations for change.

• Choose life People who are homeless or have problem drug use are more at risk of suicide than the general population. Inclusive Edinburgh provides suicide prevention training for staff working with these at risk groups.

• Escalating Concerns procedure The Escalating Concerns Procedure sets out an approach to responding to the needs of people with complex care needs who do not meet Adult Protection criteria. It enables services to work together at the operational level, and, senior management level, to manage risks and promote solutions. Further information is available at http://www.edinburgh.gov.uk/info/20029/have_your_say/948/inclusive_edinburgh.

80 11.1 Key findings: Social services

• It is difficult to draw conclusions from the data available as it is incomplete due to no routine or obligatory question on drug use in the database. It was not possible to link these records to those in NHS services due to a lack of a common identifier or systems being used for data sharing in this population. This means that it is difficult to provide continuity of care.

• However, this group presents opportunities for greater health and social care integration. i. five of the six women are homeless due to being victims of violence ii. twenty six out of the 38 individuals identified were not in treatment for addictions. iii. a high number of individuals were lost to follow up or had no data recorded on outcomes. This may be an indication of the chaotic nature of their lives and supports closer working between homeless and addictions services since engagement in treatment can promote stability and engagement with social services.

81 12.0 Drug-related Deaths and Non-Fatal Overdose

In 2015, the National Records for Scotland (NRS) reported an estimated 706 drug-related deaths (DRD), 93 (15%) more than in 2014, and 370 (110%) more than in 2005 [55]. Rates of DRD are higher in Scotland; in 2013, there were an estimated 9.6 drug-related deaths (DRDs) per 100,000 people in Scotland, compared with 2.1 in England and Wales. Data from the Scottish National Drug-Related Deaths Database indicates that most of these are due to accidental opioid overdose, they occurred while others were present and over two thirds occurred in people who had been in prison, police custody, hospital or drug treatment in the 6 months prior to death [56].

NHS Lothian collects, reports and reviews data on DRD according to national guidance. The definition of a drug-related death used by NHS Lothian is found in Appendix 4. There is a Lothian-wide DRD Reduction Steering Group that includes representatives from the locality case review groups, substance misuse directorate (SMD), and other members of Lothian’s Alcohol and Drugs Partnerships. The steering group collates lessons learned from DRD case reviews and oversees a Lothian-wide action plan to address risks.

12.1 Trends and demographics of drug-related deaths In 2016 there were 134 deaths eligible for case review in Lothian, a 34% increase from 2015. Of these, 96 (72%) occurred in the City of Edinburgh. The postcodes of residence (Table 12.1) reflects the distribution of people who inject drugs in the city of Edinburgh and the map in Figure 12.1 is similar to that for distribution of take home naloxone (THN) and injecting equipment provision (IEP).

Table 12.1: Drug-related deaths eligible for case review by council area in NHS Lothian, 2016 Cases eligible for local case review, 2016

City of Edinburgh (total) 96 North East 29 South East 26 North West 21 South West 20 West Lothian 20 East Lothian 10 Midlothian 8

L othian (total) 134 All cases meet the national definition.

82 Figure 12.1: Map of drug-related deaths from 2012-2016 in Lothian based on postcode of residence

83 Analysis of Lothian case review data over successive years has identified that the population most at risk are single, white Scottish men with a known history of long term substance misuse [57]. National data has indicated that the age profile of those whose death is drug-related is rising, with the median age at death increasing from 28 years in 1996 to 42 years in 2015 [56]. The average age at death in Lothian has risen from 32 years in 2008 to 42 years in 2016. The average age at time of death is seven years younger for women than men. Females accounted for 25% of DRDs in Lothian in 2016, which is a smaller proportion than previous years (32% in 2015 and 29% in 2014). Although numbers of DRD are clustered around the late thirties and early forties, the wide age range for both males and females indicates that appropriate measures to reduce risk of DRD should be implemented across the whole injecting population.

Table 12.2: Drug-related deaths in Lothian, 2016, by age All Male Female Mean 42 44 37 Median 42 43 35 Range (youngest-oldest) 15-70 17-70 15-63

Figure 12.2: Drug-related deaths in Lothian, 2016, by age & gender

12.3 Social isolation/ limited social networks In the majority of cases of DRD in Lothian in 2016 the deceased lived alone prior to death (81 cases, 60%). In a little under half of all cases the deceased died alone (63 case, 47%). In most of these cases where the deceased died alone they also lived alone (54 cases, 40%).

84 12.4 Death following release from police custody In Lothian in 2016 the deceased died within six months of being released from police custody in 35 cases (26%). Two died within two weeks of release from police custody, four within four weeks and 17 within 12 weeks. There were only eight cases last year in Lothian where the deceased died within six months of prison liberation.

12.5 Substance use In 2016, as in previous years, the majority of deaths (110 cases, 82%) occurred among those with a long term history of substance misuse (greater than five years). A little over half were known to be intravenous drug users (69 cases, 51%) and in the majority of cases (101 cases, 75%), more than one controlled drug was implicated in the final cause of death.

In 2016 the substances and prescriptions most commonly implicated in death (as identified in toxicology taken at post mortem) were: heroin/ morphine (96 cases, 72%); methadone (66 cases, 49%); diazepam (55 cases, 41%); dihydrocodeine (35 cases, 26%); gabapentin (23 cases, 17%); pregabalin (10 cases, 7%); and buprenorphine (eight cases, 6%). Other substances present include: cocaine (16 cases, 12%); etizolam (10 cases, 7%); MDMA/ Ecstasy (seven cases, 5%); cannabis (24 cases, 18%).

Based on prescription data acquired for case review, the diversion of prescribed drugs remains a problem (Table 12.3). The increase in heroin/ morphine related deaths is particularly significant and has increased from 18 cases in 2012 to 96 cases in 2016 – a 43% increase on the 46 cases reported in 2014 [58]. In Lothian in 2016 long standing misuse of alcohol was reported in 72 cases (54%), and alcohol was present in the post-mortem toxicologies of 65 cases (49%).

85 Table 12.3: Substances implicated in death Substances implicated in Known to have been death (number of cases) prescribed to the now deceased at time of death (number of cases) Most common 2016 2015 2016 2015 controlled drugs in (Case total: (Case total: Lothian DRDs 134) 97) Heroin/ morphine 96 55 - - Methadone 66 49 45 40 Diazepam 55 29 46 35 Dihydrocodeine 35 22 12 12 Gabapentin 23 20 12 12 Others of note: Cocaine 16 22 - - Etizolam [NPS] 10 1 - - Pregabalin 10 7 6 6 Buprenorphine 8 4 1 0 (+1 in (+2 in suboxone) suboxone) MDMA/ Ecstasy 7 3 - -

12.6 Comorbidities In 2016, as in previous years, the majority had one or more diagnosed mental health conditions at time of death (80 cases, 60%). The most commonly reported conditions are depression and anxiety (61 cases combined, 46%). In 41 cases (31%) the deceased was known to have attempted suicide at some point during their lifetime. In 34 cases (25%) it was reported that the deceased had engaged in deliberate self harm (excluding non-fatal overdose which is counted separately) at some point during their lifetime. In 2016, as in previous years, the majority had one or more diagnosed physical health condition at time of death (86 cases, 64%). The most commonly reported are respiratory conditions (27 cases, 20%), and hepatitis C (14 cases, 10%).

12.7 Contact with substance misuse services In 2016, 75 cases (56%) were not in contact with a specialist or primary care addictions service at the time of death. Non-engagement in services was higher in males than females; 60 cases (59%) versus 15 cases (45%).

Of the 59 people who were in treatment for addictions, 36 (61%) were in treatment with their GP under the drug misuse National Enhanced Service (NES), 16 (27%) with SMD, and seven with other services (e.g. Drug Treatment and Testing Order, Regional Infectious Diseases Unit). In 33 cases (25%) the deceased had contact with SMD at some point in the year prior to death. In 47 cases (35%) the deceased was

86 known to be receiving opioid substitution therapy at time of death; methadone in 45 cases, suboxone and buprenorphine in 1 case each.

Despite the lack of engagement with specialist substance misuse services the majority were in contact with their GP for other health issues prior to death; 90 (67%) were seen by their GP in the month prior to death and 112 (84%) were seen by their GP within a year prior to death.

12.8 Non-fatal overdose In over half of all cases in Lothian in 2016 the now deceased had a documented history of non-fatal overdose (71 cases, 53%). The average number of episodes of non-fatal overdose, as recorded by GP or A&E, prior to a drug-related death was three.

The Scottish Ambulance Service provides information on cases of suspected opiate overdose to SMD. This information is screened to identify whether the patient is already in treatment. If they are, the patient`s practitioner is informed of the overdose. If they’re not, case information is referred to third sector agencies who undertake assertive outreach. This initiative was started in May 2015.

In 2016 there were 431 cases of non-fatal overdose attended to by the Scottish Ambulance Service (cases of suspected opiate overdose). Of these 278 (64%) were male, 145 (34%) female and 8 unknown gender. Age is known in 316 cases and 37% were under 35 versus 28% under 35 in cases of DRD.

Table 12.4: Non-fatal overdose (SAS cases), Lothian 2016: by age, for cases with available data. Age Under 16 - 24 25 - 34 35 - 44 45 - 54 55 - 64 65 - 74 Over range 16 75 Case 1 24 93 95 50 24 14 15 number

Mean 41 years Median 38 years Range 9-94 years

In 45 cases (10%), the individual was engaged with specialist addictions or mental health services at time of non-fatal overdose (although some could be under GP care). Of the remainder, 124 cases (29%) were eligible for referral to third sector agencies for follow-up and in 262 cases (68%) no action was taken. Reasons for no action include: lack of contact details; information received too late for follow up; the person had refused treatment; referral to addictions services was deemed inappropriate (e.g. accidental morphine overdose in a patient prescribed morphine in relation to a cancer

87 condition and who had no history of substance misuse); the person had died; the person was in prison following overdose; or the person lived out with Lothian.

12.9 Key findings: Drug-related deaths and non-fatal overdose

• In 2016 there were 134 deaths, a 34% increase from 2015. Most (72%) deaths occurred in the City of Edinburgh

• The highest risk group are single, socially isolated, white males with a long term history of poly substance misuse (including alcohol) and an increasing number (72% in 2016) are heroin/morphine related deaths

• Younger women are particularly vulnerable: deaths in women account for 25% of the total but the average age is 37 years (seven years younger than men)

• 59% of males were not in contact with substance misuse services at the time of death (compared to 45% of women).

• Drug-related death is a risk following release from police custody; 35 cases (26% of all deaths) occurred within six months, versus eight cases within six month of prison release.

• Co-morbitities include mental health conditions (60%), respiratory conditions (20%) and hepatitis C (10%)

• Non-fatal overdoses are a major risk factor for DRD, many individuals are young (37% of cases of non-fatal overdose were under 35 years), and only 10% of people identified were already engaged with addictions services at the time of overdose.

88 13.0 Views of people who use the services

NHS Lothian Department of Public Health and Health Policy, and the Edinburgh Access Practice for homeless people sought the views of people using services in two separate pieces of work.

13.1 People in recovery and current injectors attending different services (NHS Lothian Department of Public Health and Health Policy) Participant characteristics Of the 29 people interviewed six were women, five as individuals and one as part of a couple, with her male partner. Fewer women were available to interview at the locations attended. Many of those interviewed had been in custody and /or prison, including people not actually seen in either of these settings. In total, over half had experienced prison, some several times. At least 16 people described themselves as currently homeless, either living in a B & B or a hostel, staying with friends or actually on the streets. In addition, two of the men interviewed in prison expected to be homeless on their release.

The youngest person interviewed was 22 years old and the oldest 56. Many described a drug habit stretching back over many years, with some having started at 11, 12 or 13 years old. This was not universal – at least 2 respondents (one in his 20s and one in his 40s) said they had only used for 2 years, were currently on methadone and determined to stop at this point in time. Actual injecting of heroin tended to come later on in the drug taking career. It was not the first type of drug, nor route for most of those interviewed. Injecting was often initiated when the person was seeking a bigger hit and influenced to do so by injecting peers.

Views on current services Most though not all respondents were aware of specialist services available, such as the Spittal Street Centre, the Edinburgh Access Practice and the different Recovery Hubs, whether or not they made use of them all. Some did not identify with the concept of the recovery hub and referred to them as just another service they would go to get their needles.

Respondents were generally unable to suggest any extra services they would like to see, but did have some comments about current organisation and delivery.

Several people talked in negative terms about what they perceived as a lack of control over how and when they could access services. They disliked for example, the fact that there were designated hours for certain things (e.g. what time they could come in to get their methadone at Spittal Street) or that some services offered a drop-in rather than an appointment system, because this might mean not being seen at all if all available slots were already taken. At the same time, most of those

89 interviewed freely recognised that they often found it very difficult to keep appointments, for a variety of reasons.

Three people were interviewed in a pharmacy but others also spoke about their experiences of getting methadone from their chemist. A positive experience often seemed to depend on a good relationship with particular members of staff. Many were described as friendly and welcoming although others were less so, even in the same shop. One respondent, who had difficulty in remembering and keeping appointments, said that his local pharmacist would remind him when he needed to see his community psychiatric nurse to get a new prescription. Another contrasted the attitude of the new manager at his local chemist with the previous owner, whom he had known for some time:

‘They dinnae speak to you. The old chemist, they’d speak away to you, really nice.’

He further complained that the new manager had instituted time constraints on when methadone users were allowed to come in, and felt this very keenly as unjustified discrimination.

This perception of being seen and treated as a ‘second class citizen’ was reiterated many times; a number of respondents felt they were looked down on and made to wait so other shoppers could be given preference. However, the partitioned section at the back of one pharmacy which reinforced this feeling for several respondents was, on the other hand, seen as privacy and a positive advantage by others. A key issue appears to be whether or not people feel that as methadone users they are explicitly singled out, with no other option but to be visible. One respondent described a situation which he perceived as unnecessary and degrading, where he was required to use a different door, clearly signed, and wait outside on a busy shopping street, sometimes for up to 20 minutes.

Feedback about staff encountered in specialist services was generally positive. Several respondents referred to specific workers by name, although they were sometimes unclear about their precise role and remit. Clearly what matters to people is a good relationship and the level of support received rather than knowing the precise professional term for the worker who provides it. In particular the capacity to work with and across a variety of services is valued, because recovering addicts need help in so many different areas. One respondent said that he didn’t know how he would manage the demands of daily life without his key worker. Another, about to be released from prison, commented:

I’ve got Lifeline picking me up, I’ve got a Lifeline worker they are taking me out picking me up from the gate, taking me to sort out my prescription, job centre, doctor everything like that so I have somebody there that is going to help me.

90 Integrated and intensive support of this kind is even more crucial for people with poor literacy skills. One of the prisoners interviewed said that he was unable to read or write. This was not specifically raised by any other respondents but is likely to be an issue for a number of drug users, given literacy rates across the general population. This needs to be borne in mind in relation to conveying any kind of information.

Many respondents used the Edinburgh Access Practice for health care but some were registered with other practices across the city. While some felt that GPs needed to be better informed about addiction and relevant services, others (mostly in areas with a high number of drug users) described a very positive relationship with their doctor.

There was positive feedback from several respondents about peer led support, both in terms of groups as well as the potential for informal one-to-one contact, perhaps in a waiting room. One interviewee felt this provided the opportunity for better conversations with professionals; he suggested that he would find it easier in the first instance to confide in a peer supporter, who would then help him relay the information he wanted. The most enthusiastic proponents of peer support were possibly those who had found help in this way in the past, and were now peer supporters themselves.

There were widely differing views on Narcotics Anonymous; some clearly felt the meetings had been, quite literally, a lifeline for them, but others disliked the religious overtones:

‘Like NA? Shit. Well no not shit that’s a lie. But they do try and put the bible in your hands.’

A number of respondents expressed a preference for one-to-one support over groups. However, some peer supporters expressed the view that with increasing confidence many recovering addicts might progress to finding groupwork both possible and helpful, and had observed this transition. The structured groups or classes focussed on specific activities offered at Spittal Street Centre were very popular with a number of respondents. One long term injector was not keen to access groups but it seemed that he was unaware of what the focus of the group could or would be. He referred to diversionary activities that he had attended when he was young and would be interested in doing as an adult that involved mechanics and fixing old cars and motorbikes.

Respondents were asked specific questions on blood-borne virus testing, overdose, experience of naloxone and access to clean works. Most had been tested for Hepatitis and HIV and knew their status, although some individuals had ‘not got round’ to finding out the result. There was no clear evidence of widespread reluctance to take up treatment for hepatitis C, apart from the perennial difficulty of

91 keeping appointments; one person said they had been deterred by anxiety about side effects.

For those who were interviewed in prison it seemed that the prison setting provided a welcome opportunity for them to get tested and that is where they had received their previous tests each time they were in custody.

Respondents who had experienced an overdose – some three or four times – were frequently not very clear about the circumstances, the aftermath or the kind of support they had been offered afterwards. A few described coming round and leaving before or as the ambulance arrived. Naloxone was almost universally approved of as a good idea, although not all had been offered it. Some were resistant to use it for fear of the consequences of ‘ruining someone’s hit’. They felt that the person they were administering it to might have been angry and become violent with them, although they did accept how important it was to have it on their person. Those who had been taken to hospital stated that they signed themselves out as quickly as possible and were not interested in speaking to staff.

No interviewees said they had ever encountered difficulties in getting hold of clean works, except for one on one occasion late at night. Indeed several voiced quite strong disapproval of people who sometimes didn’t have enough clean works and consequently shared needles, with comments such as ‘there’s no excuse’ and ‘they’re just lazy.’

Respondents were also asked their views on safe injecting rooms and heroin assisted treatment but there was no consensus regarding either of these approaches. There was greater support for safe injecting rooms, with most seeing potential benefits especially for people living and using on the streets, or in public. Dissenting voices suggested that people on treatment or considering stopping would be encouraged to start using heroin again, and many thought that the police would just ‘hang around watching for people.’ The concept of heroin assisted treatment was clearly new to many people and they were unsure as to what they thought. Some felt that harm would be reduced because heroin is easier to come off than methadone and the drug would be quality controlled. Others saw no benefit, they considered that heroin was in itself ‘a horrible drug’ that people should not be maintained on.

The main issues Clearly respondents views on services and how helpful they found them were informed by their own experiences and those of people they knew. A number of recurring themes emerged from the interviews.

92 Lengthy assessment period for OST A major issue raised was the difficulties posed by a lengthy assessment period, that is, the waiting time between first presenting for treatment and actually getting a methadone prescription. A number of respondents suggested that 8-12 weeks is not unusual. The effect of this was eloquently described by one respondent:

‘I just had to deal with it on my own. There’s nothing, I mean people can say stuff, say that they’re there, to talk to us, like that. But talking doesn’t get rid of withdrawal symptoms. Every day I still had to, I mean I had that in the back of my mind, you know, (date I can start, date I can start), but every day, you know, also another voice in the back of my head that said, you need to, you know, you’re withdrawing, you’re going to start being sick, and stuff like that, Each hour that passes you need to make money or you need to go out and get drugs, and I knew, from the first day that I came here, that it was kind of like a death sentence, well not a death sentence if you know what I mean, it was kind of like a prison sentence in that I knew when I was getting the help, when it was starting, but the fact that it was so long (lengthy pause) away. I mean you say 2 months, it’s not a long time but you know when you’re sick of living, the way I was living. And you come in here, wanting help, and it’s like you’re ready, right there and then, for the help, but it’s in 2 months time. A lot of things could’ve happened to me in 2 months. I could’ve been caught shoplifting in those 2 months and been sent to prison, which woulda thrown all this out the window.’

The consequences of delay could be significant. Another respondent, back in custody after being released two days previously, commented:

‘The problem is I always get put on a treatment order from court, but in the meantime what are you meant to do to feed your habit? So I’m still committing the crime to feed my habit. So I can never get on to the treatment order if you know what I mean……..It’s not like fast enough to help you out, if you know what I mean.’

Respondents generally felt that they were treated with consideration in custody and helped, through receiving medication, to cope with the effects of their withdrawal while being held. One reflected that if it were possible to do this for people in custody he didn’t understand why there could not be ways to help people waiting to start treatment.

Recovered addicts were also critical of such long delays. There was a view that facilities on offer, such as support groups or opportunities to talk for example, were not something that people would be able to access in any meaningful way at this particular juncture, or could really help them through the wait before starting treatment.

93 Methadone programme A second common theme was the ambivalence that many respondents expressed about methadone, or its substitutes, as a treatment option. One respondent acknowledged that:

‘It’s put me back on my feet. It means I can get up and go to work every day.’ but added that methadone ‘…builds in another step to getting clean.’

Other respondents queried the wisdom of replacing one addictive drug with another. There was evidence of a deep seated fear about coming off methadone, as withdrawal was perceived to be much worse than with heroin. There was also a widely held view that health professionals are reluctant to help people reduce their methadone or come off it.

‘Cos you’re on it for life, they dinnae want to take you aff it, know what I mean.’

Although it was recognised that some people may be happy to stay on methadone more or less indefinitely, several respondents expressed anger that addicts in recovery are not more actively supported and encouraged to move onto the next stage i.e. a lower dose or complete recovery.

There was a view that treatment options are limited and inflexible. One respondent talked about his partner who experienced difficulties ingesting liquid methadone but was offered no alternative, although he felt sure that one existed:

‘They should, I dinnae mean this place but like the pharmacist or the doctor or whatever should accommodate to that individual persons needs….Instead, you just - oh, they’re all fucking smackheads, they’re all taking methadone, that’s it, they’re all getting methadone, and that’s it.’

Clearly there may be clinical reasons why an individual needs to be on a particular dose which can’t be reduced and it is possible this is not always well understood, especially in relation to injecting use ‘on top’. Individual respondents also recognised that although they disliked the loss of autonomy inherent in the treatment programme, for example with daily supervision, it had benefitted them.

Nonetheless, anger about a perceived dismissal of people who inject drugs as simply ‘junkies’ and by implication undeserving of help, not only by the general public but also sometimes extending to service providers, was strongly expressed.

Mental health A number of respondents expressed feelings of embarrassment and shame about their drug use and consequent behaviour, such as begging or selling sex, often alongside anger about what they perceived as unfair or denigrating treatment. They

94 were aware that injecting drug users are judged harshly by society in general, and several distanced themselves from those they considered to be ‘real junkies’, by way of a defining type of behaviour that they themselves professed to be above, for example, people who leave used needles in places ‘where bairns can pick them up.’

Such lack of self worth, combined with the implacable need to meet the demands of their addiction, resulted in poor physical as well as mental health. Loss of weight due to poor diet was commonly mentioned, alongside some of the more direct effects of injecting, such as wounds. Most respondents were smokers with a significant number suffering from Chronic Obstructive Pulmonary Disease (COPD). For some, this affected their ability to get to services as walking and breathlessness was a problem.

Most respondents described feelings of anxiety and depression with several on medication, and a few specifically referred to stays at the Royal Edinburgh. Some had overdosed on prescription drugs in an attempt to commit suicide and self harm was mentioned specifically by those in prison. In addition, several respondents talked about very traumatic events in their lives such as childhood abuse, parents being in abusive relationships, losing contact with family, losing friends or a partner through drug use and in some cases actually finding or being present with the person who overdosed and died.

Several respondents said that it was during periods of feeling very low, or after a difficult or sad experience, that they tended to relapse back into drug injecting. Some identified a viscious cycle of drug use and depression which prevented them from engaging with available services. They were interested only in picking up their injecting equipment or their prescription without having to speaking to anyone, including workers.

The focus group participants, all of whom had been ‘clean’ for a number of years, strongly emphasised the need for addicts in recovery to develop new ways of coping and thinking. Those currently injecting or on treatment concurred with this, inasmuch as the reasons given for wanting to stop were often expressed in terms of total weariness with themselves and their existence, and a strong desire to stop living in a way that was completely and utterly controlled by their drug habit. As one respondent put it:

‘I wasn’t eating at all because I never had any money. Any money that I got, you know if I got £5, I never looked at it, as sort of £5, I could spend that on food or electricity or whatever, all of that, it’s….oh that’s half way towards getting a £10 bag of heroin, I’m half way there already, I just need to make another £5…..Every day, when I was using heroin, every day I would like, when it got to a certain point in the day when I’d had enough heroin to, to, you know, for my addiction so that I wasn’t withdrawing any more and stuff like that I’d make plans for the next day. And then

95 they plans would go out the window the next day as soon as I woke up and I was withdrawing because first thing on my mind was right I need to get money, and if I have money right I need to get drugs.’

Some respondents described very positive experiences of counselling and psychological support, which had helped them to understand and begin to address some of their difficulties. This was accessed from different sources, for example, their community psychiatric nurse, or while in prison. Others felt they needed more help, particularly at vulnerable points such as release from prison, or leaving hospital. One or two respondents described strong feelings of being completely abandoned and let down by services at this point.

Support networks When asked about what had finally brought them to the stage of seeking treatment, respondents typically made comments along the lines of being ‘sick of living’, that their life had become ‘unmanageable’ or fear that if they continued on their current course they would end up dead. Two men specifically referred to not wanting to be perceived by their children as addicts as the decisive factor in their decision. However, motivation to sustain recovery could be sorely tested by staying or being returned to accommodation in an area where they had been known as an addict, and it was consequently very easy to slip back into networks of fellow drug users, many of whom had been friends.

Some also felt threatened and described being hassled and pressurised to buy drugs and return to their old ways; one man said he had been assaulted on the street near his home when he refused to buy drugs. The willpower required to withstand this kind of ‘persuasion’, whether friendly or otherwise, must be considerable and can propel people into situations of extreme isolation. Several respondents talked about spending a lot of time alone or seeing only one or two trusted contacts. As one man put it:

‘I just go to the gym and stuff every day eh. Keep myself to myself.’

For some, isolation can be exacerbated by a fear of going out due to anxiety or depression.

People observed in the premises and waiting rooms of different services appeared, unsurprisingly, to know many of those also attending; it is likely that individuals may build up alternative networks of support with others on treatment.

However problems clearly remain for many who wish to stay in a familiar community they like but where recovery is impeded by other peoples’ previous perceptions of them. Those about to be released from prison were fatalistic about their chances of

96 sustained recovery and felt they would inevitably lapse back into addiction, unless they received a great deal of help. In conclusion, these interviews were held with people who inject drugs or are on methadone treatment, to gather their views on general and specialised health and drugs services. Interviewees were at different stages of their treatment and the findings reflect this. Service providers were not interviewed at this point in time.

Respondents recognised themselves that drug addicts are not always the easiest or most straightforward people to interact with. One participant specifically referred to seeing fellow clients behave rudely and aggressively to pharmacy staff, and those in recovery described addicts as being adept at manipulation. Some individuals also remarked that they had been upset and angry about a key workers decision, for example instituting daily supervision, but were subsequently able to see the benefits.

It seems undeniable that balancing the individual service user’s need for autonomy and control with the necessity to impose constraints on their access to and use of drugs, if they are to successfully recover, is a specialist negotiation that requires skill and knowledge. The researchers acknowledge that it is also a role of which they have no direct experience. While being unconnected with any of the services may have been advantageous in encouraging respondents to be more open in certain respect, it also seems clear that some were less than candid about all aspects of their current drug use.

Nonetheless, the views expressed and the experiences described indicate some clear findings and areas for consideration.

13.2 People attending the Edinburgh Access Practice for the homeless Participant characteristics Semi- structured interviews were carried out by one interviewer with 30 participants. Ages ranged from 36-62 with a mean age of 46. Twenty two of the participants reported injecting in the last six months while all participants reported injecting use previously. Twenty one participants were currently homeless or living in homeless accommodation while nine had their own home but had been homeless in the past.

Views on current services Some respondents were positive regarding services in Edinburgh for drug users and couldn’t suggest areas for improvement. Some considered Edinburgh to be better than other cities they had lived in or reported they had witnessed services developing over time.

‘They’re (services) pretty good here with the access practice and all the services that come with it. It makes such a difference having all the services in the one place.’ (Current Injector)

97 A number suggested increased outreach services or a mobile unit that would attend different locations to provide services.

‘More doctors and that at the places where people are rough sleeping. Or even to go to like the night shelters. Maybe in a van or something coz these people are the ones who need help most from doctors and nurses but their lives are so chaotic they aren’t able to go get it themselves.’ (Current Injector)

One respondent suggested improved communication between prison and primary care was needed particularly in regard to scripts of opiate replacement.

‘Leaving prison there has to be more support. For scripts especially like methadone...They leave you waiting and that’s how most people end up back on the tools.’ (Previous injector)

The main issues Naloxone Of the 22 who were injecting, only six currently had a naloxone kit. No participants had used their kit before. Of the 30 participants, 19 had previously had an overdose but none had been injected with naloxone by a non-medical person.

Public injecting Of the 30 participants, 24 (80%) had injected in a public place at one point in their lives. Immediacy was a common theme with users feeling the need to use soon after purchasing drugs due to withdrawal (rattling):

‘For quickness – I was rattling and needed a jag.’ (Current Injector)

Others identified that due to homelessness there was nowhere else to go apart from public place:

‘Well I’m staying in a tent so there’s no’ really anywhere to go. I hate it and it’s so stupid doing it outside but I have no other option.’ (Current Injector)

Safer injecting facilities When asked specifically about use of Safer injecting facilities (SIFs) the majority said they would use SIFs if available:

‘Aye – the safety and cleanliness of the environment. All the tools and staff on hand to help me if I was to go over.’ (Current injector – public in the last 4 weeks)

However many reported that given the choice between a private place or a SIF, they would rather inject in a personal place due to privacy and comfort.

98 13.3 Key findings: Service user views Service providers • Good relationships with professionals really matter, and integrated care and support provided by one key worker is highly valued. • Staff in specialist services are generally perceived as supportive and helpful; this extends to some but not all providers in other services, such as some pharmacies and GP practices. • Peer support is valued, informally as well as in groups, although some prefer a one to one approach. Activities based groups were positively commented on.

Services • The lengthy assessment period between presentation and starting treatment is a major issue for service users, with potentially serious consequences. • Respondents generally felt that the range of services currently available met their needs, but some were not aware of all the specialist services on offer. • There was no consensus on the need for safe injecting facilities or heroin assisted treatment. The majority of people interviewed at the Edinburgh Access Practice indicated they had injected on the street and would consider using such facilities; although many indicated that given the choice they would prefer to inject in a personal place. The views of people (of which 55% were homeless) interviewed in other settings included concerns about efficacy and uptake.

Naloxone • Among the people interviews at the Edinburgh Access Practice, 6/22 had a naloxone kit and 19/30 had previously experienced an overdose.

Mental health • Poor mental health, often linked with traumatic events prior to or arising from their drug use, was identified by almost all respondents, and their need for ongoing help. • Some felt they needed more support with mental health issues; however not all would or had accessed support offered.

Times of transition • Critical transition points, or times of greater vulnerability to relapse were highlighted – release from prison or hospital, assessment period, return to previous social/community networks.

Sampling • Recruitment of people for interviews was through services. Therefore, women and other groups with low levels of service engagerment were under represented in these interviews. Any future assessment will take steps to rectify this bias.

99 14.0 Staff Consultation Survey

14.1 Respondents The survey was sent to all NHS, local Authority and third sector workers involved in addictions services in the City of Edinburgh. It was also sent to relevant groups in the Scottish Prison Service. The survey was completed in full by127 respondents and partially by 60. Of all respondents, 35% provided city wide services and the rest locality based services.

Table 14.1: Numbers and characteristics of staff fully completing the staff consultation survey Number (%) Respondent’s Job Title Respondents General Practitioner 30 (24%) Drug/ Alcohol Practitioner 26 (20%) Nurse in Specialist Service 18 (14%) Community Pharmacist 9 (7%) Doctor in Specialist Service 9 (7%) Nurse (Prison/Custody) 5 (4%) Social Worker 4 (3%) Other Substance Misuse Directorate (SMD) health professional 3 (3%)

Other (including Prison, Support worker, Nurse in hospital, 23 (18%) Hostel support worker, Counsellor, Psychologist)

Total 127 (100%)

14.2 Contact with older and younger persons who inject drugs Of 185 respondents, 78 (42%) reported having frequent or very frequent contact and 42 (23%) reported never or rarely having contact with people who inject drugs aged 16-24. Of 187 respondents, 129 (70%) reported having frequent or very frequent contact and only 20 (11%) reported never or rarely having contact with people who inject drugs aged over 35 years.

14.3 The most important unmet health needs 150 respondents provided their opinions on unmet health needs of people who inject drugs in Edinburgh. Mental health issues were the most commonly identified unmet health need (n=74, 49%), followed by blood-borne viruses (BBV) testing, vaccination and treatment (n=45, 30%) and general health issues (n=34, 23%), in particular co- morbidities in older patients and respiratory issues in patients with high levels of smoking (Table 14.2).

Access to opioid substitution therapy (OST) was mentioned by 31 (21%) respondents with many highlighting delays in getting onto treatment particularly when stabilising patients.

100 Table 14.2: Unmet health needs identified by staff respondents Unmet need identified Number (%) of respondents Mental health problems 74 (49%) Support, counselling and help for dealing with previous trauma 34 (23%) BBV testing, vaccination and treatment 45 (30%) General health and other physical health conditions 34 (23%) Access to opioid substitution therapy (OST) 31 (21%) Social support including housing and benefits 23 (15%) Care for injecting site infections and deep vein thrombosis 20 (13%) Overdose risk and take home naloxone provision 19 (13%) Availability and access to provision of injecting equipment 19 (13%) Improved education for drug users, safe places to inject / 15 (10%) provision of an injecting room, sexual health, nutrition / diet and dental & oral health. Residential rehabilitation and promotion of recovery 10 (7%)

14.4 Enablers and barriers to harm reduction interventions Location and ease of access to services, plus community engagement were identified as two major factors that enable uptake of harm reduction services. The main barriers identified were clients’ chaotic lifestyles and lack of motivation, plus fear, stigma and poor mental health. Waiting times and rigid appointment systems to access services such as opiate substitution therapy were both felt to be significant barriers.

14.5 Current availability of interventions Of 133 respondents, 82 (62%) thought advice on safer injecting was good or excellent and 79 (59%) respondents considered injecting equipment provision good or excellent. When asked about OST, 84 (63%) respondents rated the provision of as good or excellent. However, only 40 (30%) felt rapid access to OST for higher risk clients was good or excellent (Figure 14.1).

‘Spittal St threshold is too high. I got nowhere when I was deeply concerned for a drop-in and wanted him scripted asap for safety. "Luckily" the individual was homeless - access practice provides good low threshold service’ (Drug and Alcohol Practitioner)

‘Waits to start treatment are excessive’ (General Practitioner)

The blood-borne virus testing service was felt to be good or excellent by 77 (58%) of respondents, and 61 (46%) felt that active support for completion of treatment was good or excellent.

Oral health services were rated as poor by 43 (32%) respondents. ‘Most I have spoken to are unaware of where they can go to get dental treatment and often avoid due to anxiety about dentist’ (Drug and alcohol practitioner)

101 Figure 14.1: Service provider ratings of current harm reduction services based on 133 responses to the question ‘How would you rate the availability of the following interventions for your clients?’

102 14.6 Additional harm reduction interventions that could be provided Of 129 respondents, the most frequently identified additional intervention needed was more motivational interventions to help people change injecting behaviour (n=97,75%), and, 60 respondents (47%) indicated the need for greater availability of ‘low threshold’ methadone prescribing with 77 (60%) identifying the need for more regular contact with professionals for people on OST (Table 14.2).

Seventy three (57%) respondents felt supervised injecting rooms should be provided in Edinburgh and 39 (30%) were in favour of heroin assisted treatment. More options for out of hours injecting equipment provision was identified by 73 (57%) respondents, but options such as IEP vending machines and home delivery were not popular.

Homeless people and chaotic, high risk injectors were identified as particular groups that would benefit from these extra interventions.

Table 14.2: Additional Harm Reduction Interventions needed Harm reduction intervention Number (%) of respondents Motivational interventions 97 (75%) More availability of ‘low threshold’ methadone prescribing 85 (66%) More regular contact with professionals for people on OST. 77 (60%) More options for out of hours injecting equipment provision 73 (57%) Supervised injecting rooms 73 (57%) Emphasis on smoking instead of injecting opiates for some 60 (47%) Heroin assisted treatment 39 (30%) Written information & advice for people 37 (29%) IEP vending machines 26 (20%) Home delivery of IEP 20 (16%)

14.7 Training needs of staff Of 127 respondents, training on understanding and responding to client trauma was considered important by 70 (55%), and 60 (47%) respondents felt motivation and behaviour skills training would be of use. Roughly a quarter of respondents felt BBV testing, sexual health and safer injecting practice training would useful and nearly a third thought that additional training would be useful on the risks of groin injecting, image and performance enhancing drug use and chemsex.

Some respondents (n=14, 11%) felt that additional training on the above would not be useful. Many responses cited other issues rather than lack of training being the main problem.

‘I don't think more training is the issue. I expect that more time to do what we know is the correct thing would help and more cooperation with secondary care services.’ (General Practitioner)

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14.8 Further issues raised in staff consultation A number of staff felt the sole focus on recovery and abstinence was not the correct approach.

‘I think the political agenda needs to move away from recovery/ abstinence to encourage the best recovery possible FOR THAT PATIENT. It’s important to try to link up services as much as possible and we really need longer appointments to deal with the complex mental/ physical/ addiction issues of these patients.’ (General Practitioner)

While a number of others raised funding cuts as one of their major concerns for services.

‘My biggest concern is that staff are having to be much more than harm reduction workers as cuts continue across social services. Services who did provide support are no longer there or have been taken over, staff with skills leave, these staff are replaced with people for less money.’ (Nurse in Specialist Service)

14. 9 Key findings: Staff consultation survey

Priority health needs of service users • Mental health issues were the most commonly identified unmet health need (n=74, 49%) and more than half felt extra training on responding to client trauma would be of use. • Rapid access to OST for high risk patients is a major area of unmet need. The provision of rapid access ‘low threshold’ methadone particularly for high risk clients was not considered as good as general provision of OST in Edinburgh. • General poor physical health and BBV testing and treatment support were also identified as areas for improvement.

Staff opinions on interventions and changes to services • 75% of respondents felt that more motivational interventions to help people change injecting behaviour should be provided in Edinburgh and 66% felt there should be more availability of ‘low threshold’ methadone prescribing. • 57% of respondents were in favour of supervised injecting rooms but only 30% were in favour of heroin assisted treatment. • Location, ease of access and support were identified as key enabling factors for those attending services.

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15.0 Conclusions and Recommendations

The data collected from service users, service providers and epidemiological sources is well aligned. This has made it possible to identify the unmet harm reduction needs of injecting drug users in Edinburgh, and to make recommendations to address these needs.

15.1 Conclusions A stronger systems approach to care: There is a degree of service integration from the service perspective, but there are not common standards for harm reduction that are understood and consistently implemented across the whole patient journey. Therefore the system as a whole does not provide the full range of holistic, patient centred care or the quality and continuity that people need.

More intelligence led services: The services are often not intelligence led because of limitations in data quality, lack of data linkage between services, no agreed performance indicators across the system and no shared approach for monitoring and evaluation.

Making the best of all available assets and resources: There have been severe cuts to addiction services in the last year and this has a major impact on capacity. However, it is important to invest in and make best use of the many well trained and experienced staff, the infrastructure and effective outreach systems that already exist and the people with lived experience, who can provide crucial psychosocial support.

15.2 Recommendations

Recommendation 1: Improve access and retention for opioid substitution therapy Services need to agree common standards, conduct a pathway audit against the standards, conduct small tests of change where needed and establish data systems to monitor progress and quality.

Evidence Summary

Epidemiology and services • In 2016, the opioid substitution therapy (OST) programme in Edinburgh reached approximately 3440 (52%) of an estimated 6600 potential beneficiaries. • OST services do not routinely provide other harm reduction measures as part of the core service. • Up to 80% of drug treatment is low intensity and provided by general practitioners through the drug misuse National Enhanced Service. • In all settings there is an increasing number of people aged over 40 years receiving treatment; 24% of the total with 19% being current injectors. This

105 population’s health needs can be predicted to deteriorate in the medium term and for them to place severe pressure on secondary and bed-based care. • A 2016 audit of specialist OST services, conducted at a time of transition, found long waits and low retention; of those presenting, approximately 20% of individuals received OST and 50% disengaged from all services within less than 3 months. This poses a significant clinical risk

Stakeholder consultation • Service users identified as a major issue the difficulties posed by a lengthy assessment period for OST, a number of respondents suggested that 8-12 weeks is not unusual. • Several service users talked in negative terms about what they perceived as a lack of control over how and when they could access services preferring for example ‘drop ins’ to an appointment system or specified time slots. • Continuity of care is valued and critical transition points where care was disrupted, were highlighted by service users, e.g. release from prison or hospital, the OST assessment period, return to previous social networks. • Staff in specialist services are generally perceived as supportive and helpful; this extends to some but not all providers in other services, such as some pharmacies and GP practices • The quality of provision of OST was rated good or excellent by the majority of staff, but rapid access to OST (especially for high risk clients) was rated poorly. • When asked about heroin assisted treatment, there were mixed views as to whether or not it was a good idea to introduce it.

Actions 1.1 An addictions consultant should lead a multidisciplinary group to conduct a pathway audit of opioid substitution therapy (OST) services against agreed standards and make recommendations for service improvement such as: non medical prescribing, greater choice of treatment (e.g. buprenorphine), discharge polices, better managing critical transition points and extended provision of high intensity/low threshold OST treatment for very high risk patients across Lothian.

1.2 Recovery hub teams, with support from the ADP Support Team, NHS Lothian Public Health and the local addictions consultant should identify areas where small tests of change are needed to achieve agreed standards for OST services; e.g. drug testing by third sector colleagues to reduce the number of visits before starting OST.

1.3 The Primary Care Facilitation Team should co-ordinate with the Edinburgh Alcohol and Drugs Partnership to explore options for non-medical prescribing in primary care, learning lessons from current practice in Edinburgh Access Practice and pilots in Boroughloch and Mill Lane Surgeries.

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Recommendation 2: Provide harm reduction as part of all service contacts There is a need to extend the reach of harm reduction interventions to include generic hospital, primary care and social services, and also promote harm reduction as part of the core intervention for addictions services.

Evidence Summary

Epidemiology and Services • Between August 1st 2015 and July 31st 2016, the Edinburgh Alcohol & Drugs Partnership provided injecting equipment to 1319 ‘regular’ users; however 46% of users may still not be receiving enough injecting equipment (NEO 2015-16). • 83% of regular injecting equipment provision (IEP) clients access community pharmacies and of these 89% exclusively so (NEO 2015-16). Pharmacies usually offer very limited harm reduction interventions, education or advice. • IEP is mainly provided through designated ‘IEP’ services; harm reduction interventions are not opportunistically available as part of other consultations across the other tiers of addictions care. • 75% of naloxone kits are distributed through NHS and third sector addictions services; there are opportunities for more distribution through hospital, social care, general practice and pharmacy services.

Client characteristics • 19% of people reported injecting in the last month with injecting equipment other than needle/syringe that had previously been used by someone else, and 20% of people had reused the same needle/syringe more than 5 times it in the last six months (NESI 2015-16). • 58% of people accessing IEP services are also on methadone (NESI 2015-16). • There are an average of 102 admissions for psychoactive substance use admissions per month across Lothian A&E departments; 78% occurred in Edinburgh, and 55% of admissions stayed in hospital for >24 hrs (TRAK 2015- 16). However, there are no formal arrangements in place for referral of in patients to harm reduction services. • Needle discards in the city centre and interviews with homeless people indicate ongoing outdoor injecting.

Stakeholder views • No service users interviewed said they had ever encountered difficulties in getting hold of clean works. • When asked about safe injecting rooms, there was broad support but many reported that given the choice between a private place or a safe injecting facility, they would rather inject in a personal place due to privacy and comfort.

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Actions 2.1 The harm reduction team should work with community pharmacy and third sector colleagues to provide enhanced harm reduction services in pharmacies: a) Use the lessons learned from the 2017 pilot of ‘in-reach’ provision of enhanced services in community pharmacies. b) Explore options to enhance existing pharmacist contacts and where necessary contracts. Many pharmacists already provide services for drug users including dispensing of hepatitis C (HCV) drugs and OST, plus the minor ailments and smoking cessation services. Options range from provision of harm reduction information packs and online training modules to increase awareness, to contract changes that include distribution of IEP ‘one hit kits’, provision of take home naloxone (THN), hepatitis B vaccination and blood- borne virus (BBV) testing.

2.2 The Primary Care Facilitation Team should work with the harm reduction team, recovery hub teams, drug misuse National Enhanced Service (NES) GPs and GP cluster quality improvement leads to make sure that people cared for under the drug misuse NES can benefit from additional harm reduction services in the general practice: a) Conduct a trial of opportunistic IEP ‘one hit kits’. b) Promote provision of take home naloxone. c) Promote annual BBV testing for people who inject drugs.

2.3 Recovery hub teams should develop a strategy to provide injecting equipment, THN, BBV testing and hepatitis B vaccination through existing contacts with clients. Many clients are known to continue injecting while on OST and IEP/THN distribution by specialist addictions staff already takes place in NHS Lothian.

2.4 Recovery hub teams and the harm reduction team should work with secondary care to establish referral pathways for harm reduction interventions for people seen in secondary care. This would include input from a designated drugs liaison person to work between A&E/in patient wards and the harm reduction team/recovery hubs.

2.5 The harm reduction team should: a) Work with localities to implement small tests of change and provide oversight for wider roll out; including promotion of injecting equipment provision, take- home naloxone, BBV testing and wound care in all care settings. b) Strengthen links and services with police custody and prison through care. c) Lead development of a ‘dashboard’ for Needle Exchange Online (NEO) data. d) Work with secondary care A&E and in patient wards, to ensure provision of THN and hepatitis B vaccination to people who inject drugs.

108 Recommendation 3: Reduce missed opportunities for hepatitis C testing and treatment There is a need to improve hospital/community outreach through targeted case finding, trial additional general practice based hepatitis C treatment sites, ensure a greater role for locality teams in blood-borne virus testing and treatment support, and further develop data systems to monitor progress and quality.

Evidence Summary

Epidemiology and services • NESI 2015-16 reports the hepatitis C antibody prevalence of people attending IEP services in Edinburgh as 48%. This is a rise of 7% from 41% in 2013-14. • 59% of people attending IEP sites had been tested for HCV in the last year (NESI 2015-6). However, local data for 2015-16 indicates that 45% of current injectors in specialist services, and 58% under the general practice drug misuse National Enhanced Service were untested for HCV in the year since last test. • NHS Lothian exceeded its HCV treatment targets for 2016/17 and has high rates of treatment success. However, in 2015-16, 51% of current or ex- injectors referred for HCV treatment at the Royal Infirmary of Edinburgh and its outreach clinics, did not attend their first appointment, and 57% of those who did attend, did not commence treatment.

Stakeholder consultation • Most service users interviewed had been tested for HCV and HIV and knew their status. There was no clear evidence of widespread reluctance to take up treatment for hepatitis C. • Most staff respondents felt that availability of blood-borne virus testing and referral for assessment for was good or excellent, although 46% reported that active support for completion was fair or poor.

Actions 3.1 The Lothian Viral Hepatitis Managed Care Network should: a) Establish a ‘HCV dashboard’ to monitor service delivery, including data from NHS Lothian Virology, SMR25a, the drug misuse National Enhanced Service and clinical data bases. b) Recruit an individual to work with hospital and community services to provide additional outreach that can identify and follow up HCV positive individuals. c) Work with Muirhouse Medical Practice to establish an additional primary care site for HCV treatment. d) Work with recovery hubs to establish an accelerated plan with targets for the transfer of community testing from the BBV team to recovery hub teams.

109 Recommendation 4: Improve support for general health and wellbeing There is a need to improve referral pathways and hospital in reach for harm reduction, improve the skill mix in localities, develop a system wide approach for chronic and enduring mental health care and support interventions that reduce social isolation.

Evidence Summary

Epidemiology and services • The population of people who inject drugs is ageing and older drug users have significantly higher rates of hospital admission for comorbidities such as chronic obstructive pulmonary disease, depression, deep vein thrombosis/pulmonary embolism and skin and soft tissue infections than comparable groups of the same age. • In Lothian in 2016, in 64% of drug related deaths a co-morbidity was present: 20% chronic respiratory, 10% hepatitis, 60% mental health; 54% alcohol misuse. • Current specialist addictions services are not configured to provide care for comorbidities, and other services that come into contact with problem drug users are not usually configured for provision or referral to addictions care. • Patients registered with general practitioners have access to medical care, but some people have difficulty registering with a GP especially on release from prison; the Edinburgh Access Practice support homeless individuals but others may continue to be unregistered.

Stakeholder feedback • Poor mental health, often linked with traumatic events prior to, or arising from their drug use, was identified as an unmet need by almost all service users and was also identified as a major gap by staff. • Most service users interviewed were smokers with a significant number suffering from chronic obstructive pulmonary disease. • Staff and service users also felt that wound care, ulcers, abscesses and deep vein thrombosis risk were an increasing unmet health need.

Actions 4.1 The recovery hub teams, supported by NHS Lothian Public Health should work with secondary care and other providers to establish clear two way referral pathways; e.g. for respiratory disease, smoking cessation, oral health, and sexual health (e.g. ‘priority access cards’ for sexual and reproductive services).

4.2 Community pharmacists and recovery hubs should promote pharmacy services including the minor ailments service, chronic medication service and pharmacy smoking cessation service.

4.3 The harm reduction team should work with recovery hubs to pilot locality based wound care with clear referral pathways to the specialist wound clinic at the Spittal Street Centre.

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4.4 The Edinburgh Alcohol and Drug Partnership should develop and strengthen approaches that reduce social isolation and promote social inclusion. This should include support from people with lived experience working within the multidisciplinary team.

4.5 An addictions consultant and a mental health consultant should lead a multidisciplinary group to explore ways to address the unmet need for chronic and enduring mental health care. This may require a system wide approach to free up capacity within the addictions team and will require liaison between A&E, in patient wards, liaison psychiatry and addictions psychiatry.

Recommendation 5: Strengthen services for vulnerable groups

The needs of people who are not engaged with services require further investigation so that services can be configured appropriately. Vulnerable groups include: women, street injectors, people recently discharged from the criminal justice system, homeless people, young people, individuals with significant risk factors for drug- related deaths (e.g. non-fatal overdose), the children, families and carers of people who inject drugs, transgender people, men who have sex with men, people with low literacy/numeracy, people who work and people from diverse ethnic and linguistic backgrounds.

Evidence Summary

Epidemiology and services • Drug-related deaths (DRD) in NHS Lothian have increased by 30% from 2015 to 2016. Seventy percent of DRD in Lothian occur in Edinburgh. Non-fatal overdoses are a major risk factor for DRD. In 2016, 37% were under the age of 35. • Homeless people account for 30% of regular IEP users and city centre needle discards indicate ongoing street injecting. • Older people who inject drugs have significantly higher rates of hospital admission for respiratory (six times greater), cardio vascular, bacterial infections and enduring mental health illness (10 times greater) than comparable groups of the same age. • Men who have sex with men are at risk from ‘chemsex’. • Younger people who inject drugs (aged under 25 years) comprise 4% of regular injectors, but 21% of people using image and performance enhancing drugs (IPED) are aged under 25 years (NEO 2015-16). NESI 2015-16 reports that 33% of people in Lothian start injecting between 19-25 years and that people leaving prison in the last six months are younger and more likely to be homeless than the general drug injecting population. • Contact with the criminal justice system is associated with DRD. NESI 2015-16 reports 15% of injectors have been in prison in the last 6 months and 80% have

111 ever been in prison. In Lothian in 2016, 26% of DRD had been released from police custody in the previous 6 months. • Women account for 25% of DRD in 2016 and the average age is 37 years; 7 years younger than men. The social care homeless data base indicates that 6/7 women registered were victims of violence.

Stakeholder consultation • Most of the service users interviewed as part of the needs assessment had been in prison or were homeless, so the feedback in previous sections can be applied to these vulnerable groups. However it is notable that the proportion of women interviewed in all settings is low and so their views may be less prominent.

Actions

5.1 The Lothian Drug-related Deaths (DRD) lead should work with the Lothian steering group to: a) Identify systematic ways to identify and intervene with people at risk of DRD. b) Develop interventions according to need e.g. ‘Keep Well’ type interventions for older people who inject drugs with comorbidities and poly pharmacy, outreach to engage younger people who experienced non-fatal overdose and interventions to address social isolation.

5.2 The harm reduction team should conduct a pilot of a dedicated Image and Performance Enhancing Drugs clinic at Spittal Street Centre.

5.3 Edinburgh Alcohol and Drugs Partnerships should work with colleagues in the City of Edinburgh Council to: a) Modify the homeless database to enable recording of drug use status. b) Establish a protocol with community and hospital partners to allow continuity of care across health and social care services.

5.4 The harm reduction team and NHS Lothian Public Health should lead an investigation into the needs of vulnerable groups and explore options for targeting services, such as extended use of the ‘NEON’ outreach bus.

5.5 The harm reduction team, NHS Lothian Public Health and health promotion should liaise with the prisons and third sector to: a) Provide injecting equipment provision on prison release, e.g. using the IEP ‘one hit kits’ as part of discharge packs. b) Explore the experiences of recently liberated prisoners and their needs in relation to harm reduction, especially women, young people and homeless people. c) Identify individuals with risk factors for drug-related death and provide additional support for them to engage with treatment and harm reduction services.

112 d) Investigate how admissions to the prison mental health and addictions team can be captured on the Lothian drug and alcohol dashboard.

5.6 The harm reduction team should liaise with police custody and the third sector to identify ways to provide the full range of harm reduction services for those attending the police custody suite including: IEP ‘one hit kits’, BBV testing and community link workers (especially for younger detainees).

5.7 Change Grow Live should work with police custody to identify individuals with risk factors for drug-related death and provide additional support for them to engage with treatment and harm reduction services.

5.8 The Edinburgh Alcohol and Drugs Partnership should: a) Work with Community justice to progress the provision of the arrest referral service within the custody suite. b) Regularly review routine data related to detainees with problematic drug use to identify and respond to changing patterns or emerging needs.

Recommendation 6: Ensure quality improvement across all services There is a need to establish common service standards, an integrated approach to quality improvement, systems for data sharing and dissemination, and a strategy for workforce development.

Evidence Summary • Across the whole system that provides care, there are no agreed common standards for harm reduction and current approaches to quality improvement are not coordinated..

• Quality and completeness of data collection is variable across the city and across different databases.

• There are no clear links between databases in settings such as police custody, social care, third sector or NHS addictions and this means that there are many missed opportunities for shared care.

• There is insufficient data on key services such as opioid substitution therapy to guide development, monitoring and evaluation of services, and feedback of intelligence to front line workers is limited.

• Service providers expressed the need for protected learning time to develop their skill mix in areas such as: sexual health, wound management, substance use in transgender and MSM populations, management of people using IPEDs, motivational skills, quality improvement, chronic disease management, trauma informed practice and service user involvement.

113 Actions 6.1 Edinburgh Alcohol and Drugs Partnership, recovery hub teams, Lothian Drug- Related Deaths Steering Group and NHS Lothian Public Health should convene a system wide multiagency group to: a) Agree local service standards and key performance indicators. b) Agree a quality improvement approach to recovery and harm reduction. c) Oversee the establishment of data systems (e.g. dashboards for OST, IEP, HCV) to monitor and evaluate service performance and quality. d) Ensure that best practice and relevant data is shared across the system. e) Ensure that as this work progresses it should become inclusive of all Lothian as appropriate.

6.2 The Edinburgh Alcohol and Drugs Partnership should work with health promotion, recovery hubs, the harm reduction team and other to develop and implement a strategy to increase the skill mix in hubs. This should include: a) A skill based workforce audit to look at existing assets and gaps. b) Consideration of options to provide protected learning time. c) Work with the Scottish Prison Service and NHS Prison healthcare team to identify and support workforce development needs. d) The elements identified above such as: ‘keep well’ type approaches to chronic disease management, provision of THN, BBV testing and injecting equipment, low threshold methadone prescribing, wound care, sexual health, respiratory assessment, smoking cessation and trauma informed practice.

15.3 Implementation The challenges to implementation remain, as ever, availability of funds, clinical governance, logistics, availability and sharing of data and intelligence, organisational culture, staff capacity and training.

However, there does need to be service change in the areas identified by this assessment. In most cases it is proposed that the recommendations be tried out through small tests of change, which once evaluated will inform roll out across the city; and where necessary justify additional resource to support the work.

A multiagency group will oversee the implementation of the recommendations and there will be feedback and consultation with service users and providers on progress.

114 16.0 References

1. Health Protection Scotland, University of the West of Scotland, Glasgow Caledonian University and the West of Scotland Specialist Virology Centre. The Needle Exchange Surveillance Initiative: Prevalence of blood-borne viruses and injecting risk behaviours among people who inject drugs attending injecting equipment provision services in Scotland, 2008-09 to 2015-16. Glasgow: Health Protection Scotland. March 2017. 2. Balfour L, Sage D. Novel Psychoactive Substances in NHS Lothian: Analysis of a cohort of inpatient admissions identified through TRAK as associated with the use of legal highs. NHS Lothian Analytical Services. February 2016. 3. Yeung A, Weir A, Austin H et al. Assessing the impact of a temporary class drug order on ethylphenidate-related infections among people who inject drugs in Lothian, Scotland: an interrupted time-series analysis. Addiction. [Epub ahead of print doi: 10.1111/add. 13898] Jun 2017. 4. Kidd BA. Essential Care: a report on the approach required to maximise opportunity for recovery from problem substance use in Scotland. Scottish Advisory Committee on Drug Misuse. 2008. 5. Kidd BA, Lind C, Roberts K. Independent Expert Review of Opioid Replacement Therapies in Scotland. Scottish Drug Strategy Delivery Commission. August 2013. 6. RR Donnelley. Road to Recovery: A new Approach to Tackling Scotland’s Drug Problem. Scottish Government. 2008. 7. Cookson R (ed.), Sainsbury R (ed.), Glendinning C (ed.). Jonathan Bradshaw on social policy: Selected writings 1972-2011. York: University of York; 2013. 8. Stevens A, Gillam S. Needs assessment: From theory to practice. BMJ. 1998; 316(7142): 1448-52. 9. Abdulrahim D et al. Models of care for the treatment of drug misusers. Promoting quality, efficiency and effectiveness in drug misuse treatment services in England. National Treatment Agency for Substance Misuse. 2002. 10. Taylor A et al. Guidelines for services providing injecting equipment. Best practice recommendations for commissioners and injecting equipment provision (IEP) services in Scotland. Scottish Government, 2010. 11. Burrows D. Guide to starting and managing needle and syringe programmes. World Health Organisation. 2007. 12. National institute for Clinical Excellence. Methadone and buprenorphine for the management of opioid dependence: Technology appraisal guidance [TA114]. January 2007. 13. Sordo, Luis et al. Mortality risk during and after opioid substitution treatment: systematic review and meta-analysis of cohort studies. BMJ. 2017; 357:j1550. 14. Hunt N et al. A review of the evidence-base for harm reduction approaches to drug use. Forward Thinking on Drugs. 2003. 15. Keeney E, Saucier R. Lowering the Threshold: Models of Accessible Methadone and Buprenorphine Treatment. Open Society Institute, International Harm Reduction Development Program. February 2010. 16. Scottish Drugs Forum. STAYING ALIVE IN SCOTLAND: Strategies to Combat Drug Related Deaths. Scottish Drugs Forum. June 2016. 17. Strang J et al. Medications in recovery: re-orientating drug dependence treatment. National Treatment Agency for Substance Misuse. 2012. 18. The National Treatment Agency for Substance Misuse. Towards successful treatment completion, A good practice guide. NTA. 2009. 19. Ashton M. Manners Matter part 1: the power of the welcoming reminder. Drug & Alcohol Findings. 2004. 20. Ashton M. Manners matter part 2: Can we help? Drug & Alcohol Findings. 2005.

115 21. Ashton M. Manners matter part 3: The motivational hallo Drug & Alcohol Findings. 2005. 22. Ashton M. Manners matter part 4: Motivational arm-twisting – a contradiction in terms? Drug & Alcohol Findings. 2005. 23. WHO Department of Mental Health and Substance Abuse. Community management of opioid overdose. World Health Organisation. 2014. 24. Iversen L, Hill R. Consideration of naloxone. Advisory Council on the Misuse of Drugs. May 2012. 25. Watt G et al. Service evaluation of Scotland’s national take-home naloxone programme. Scottish Government. 2014. 26. Stewart E. NHS Lothian BBV Testing in Adults Guideline. NHS Lothian. November 2014. 27. Dillon JF et al. National Clinical Guidelines for the treatment of HCV adults. Healthcare Improvement Scotland. National Services Scotland. 2017. 28. Quality Standards for Blood Borne Virus interventions. Lothian Substance Misuse Services. NHS Lothian. November 2015. 29. Dillon JF et al. National Clinical Guidelines for the treatment of HCV adults. Healthcare Improvement Scotland. National Services Scotland. 2017. 30. The Scottish Government. The Quality Principles. Standard Expectations of Care and Support in Drug and Alcohol Services. The Scottish Government. 2014. 31. Waddington C, Egger D. Integrated Health Services – What and Why? World Health Organisation. Technical Brief No.1. 2008. 32. Walker B. Service user involvement. A guide for drug and alcohol commissioners, providers and service users. Public Health England. 2015. 33. Hear Our Voice. A framework for service user and carer involvement in drug and alcohol recovery services in the Lothians. Edinburgh Alcohol & Drug Partnership. Mid and East Lothian Drug and Alcohol Partnership. West Lothian Tobacco, Alcohol and Drug Partnership. 2012. 34. ISD Scotland. Estimating the National and Local Prevalence of Problem Drug Use in Scotland 2012/13. ISD Scotland. NHS National Services Scotland. October 2014. 35. Drug & Alcohol Findings. Overdose deaths in the UK: crisis and response. Available from: http://findings.org.uk/PHP/dl.php?file=overdose_prevent.hot&s=eb [Accessed 17th July 2017]. 36. Cockayne L. Developing a Stepped Care Approach to Opiate Replacement Therapy in Edinburgh.. Edinburgh Alcohol & Drug Partnership. July 2016. 37. Barnsdale L, Targosz J. Scottish Drug Misuse Database: Overview of Initial Assessments for Specialist Drug Treatment 2015/16. Information Services Division. April 2017. 38. Budd J et al. Older People with Drug Problems in Scotland: Addressing the needs of an ageing population. Scottish Drugs Forum, June 2017. 39. Scottish Government. HEAT: A11 Drug and Alcohol waiting time target. Scottish Government. Available from: http://www.gov.scot/Topics/People/Equality/18507/EQIASearch/HEATA11 [Accessed 17th July 2017]. 40. Department of Health (England) and the devolved administrations. Drug Misuse and Dependence: UK Guidelines on Clinical Management. London: Department of Health (England), the Scottish Government, Welsh Assembly Government and Northern Ireland Executive. 2007. 41. Jenkins B. An Evaluation of Peer Support at the Low Threshold Methadone Programme in Edinburgh. University of Edinburgh. Edinburgh Alcohol & Drug Partnership. December 2016. 42. Shanley J, Richardson AM & Sherval J. Evaluation of a pilot low‐threshold methadone programme, Journal of Substance Use. 2003; 8(4). 43. National Institute for Clinical Excellence. Needle and syringe programmes. NICE. Public Health Guideline 52, March 2014.

116 44. Stiven H, Shanley J. Tell us 8 things: Client Satisfaction Questionnaire for service users of Injection Equipment Provision. NHS Lothian. February 2016. 45. Innes H, McAuley A. Health Protection Scotland. Personal Communication. 29th July 2017. 46. Harris H (ed.). Hepatitis C in the UK: 2017 report. Public Health England. July 2017. 47. Merrall E. L. C., Bird S. M., Hutchinson S. J. A record linkage study of drug‐related death and suicide after hospital discharge among drug‐treatment clients in Scotland, 1996–2006. Addiction. 2013; 108: 377–84. 48. White S. J., Bird S. M., Merrall E. L. C., Hutchinson S. J. Drugs‐related death soon after hospital‐discharge among drug treatment clients in Scotland: record linkage, validation and investigation of risk‐factors. Plos One. 2015; 10: e0141073. doi: 10.1371/journal.pone.0141073. 49. Stewart C. National Prisoner Healthcare Network. Healthcare Throughcare Workstream Report. NHS Scotland. Scottish Prison Service. January 2016. 50. MacArthur J, Holloway A. Health Needs Analysis of HMP Edinburgh 2016 using Vision Data. NHS Lothian. University of Edinburgh. 2017. 51. Byren T et al. Drugs, Alcohol and Tobacco Health Services in Scottish Prisons: Guidance for Quality Service Delivery. NHS Scotland. Scottish Prison Service. February 2016. 52. Thematic Inspection of Police Custody Arrangements in Scotland. Her Majesties Inspectorate of Constabulary in Scotland. August 2014. 53. Payne-James JJ et al. Healthcare issues of detainees in police custody in London, UK. Journal of Forensic and Legal Medicine. 2010; 17: 11-17. 54. Davidson, J. Sunday Choices. Queen’s Nursing Institute Scotland. January 2016. 55. Scottish Government. Drug-related deaths. Available from: http://www.gov.scot/Topics/Justice/justicestrategy/Justice-Dashboard/Low- harm/Drug-deaths [Accessed July 14th 2017]. 56. National Records of Scotland. Drug-related deaths in Scotland in 2015. Available from: https://www.nrscotland.gov.uk/files//statistics/drug-related-deaths/15/html/drug- related-deaths-2015-index.html [Accessed July 14th 2017]. 57. NHS Lothian. Drug-related Deaths Edinburgh and Lothians. Available from: www.drdlothian.org.uk [Accessed July 14th 2017]. 58. Barnsdale L et al. Information Services Division. The National Drug-Related Deaths Database (Scotland) Report: Analysis of Deaths occurring in 2014. NHS Scotland National Services Scotland. March 2016.

117 Appendix 1 - Staff Survey

Health Needs Assessment of people who inject drugs (PWID) , 2017

Aim of the survey

The survey aims to find out What you think are the main health issues of PWID? To what extent are we meeting these needs currently? What new and innovative approaches can we take in the future?

This should take about 10 minutes to complete.

* 1. We value your honest responses. All feedback is anonymous. Please choose one of the following options.

I am happy for direct quotations attributed to my generic job role to be used in the final report.

I do not wish to be directly quoted in the final report but I am happy to complete this questionnaire to inform the consultation.

118 Appendix 1 - Staff Survey

Health Needs Assessment of people who inject drugs (PWID) , 2017

About you and your work

* 2. Professional group

Other (please specify)

* 3. Organisation

* 4. Which locality do you cover?

Other (please specify)

* 5. How often are you in contact with PWID aged between 16-24 years?

Very frequently

Frequently

Occasionally

Rarely

Never

119 Appendix 1 - Staff Survey * 6. How frequently are you in contact with PWID aged over 35 years?

Very frequently

Frequently

Occasionally

Rarely

Never

120 Appendix 1 - Staff Survey

Health Needs Assessment of people who inject drugs (PWID) , 2017

Health needs

* 7. Please list what you think are the three MOST IMPORTANT unmet health needs of PWID in Edinburgh?

1.

2.

3.

121 Appendix 1 - Staff Survey

Health Needs Assessment of people who inject drugs (PWID) , 2017

Availability & quality

* 8. How would you rate the availability of the following interventions for your clients?

1- poor 2- fair 3- good 4- excellent N/A

Safer injecting advice & information

Please add any supporting comments

Injecting Equipment Provision

Please add any supporting comments

Support for motivation to change & recover (e.g. group work, 1:1s, peer work)

Please add any supporting comments

Take Home Naloxone (THN)

Please add any supporting comments

Opiate replacement therapy

Please add any supporting comments

Rapid access to opiate replacement therapy for higher risk clients (e.g. low threshold methadone programme)

Please add any supporting comments

122 Appendix 1 - Staff Survey

1- poor 2- fair 3- good 4- excellent N/A

Blood borne virus (BBV) testing-Dry blood spot testing (DBST) or venepunture

Please add any supporting comments

Referral for ASSESSMENT for BBV treatment

Please add any supporting comments

Active support for COMPLETION of BBV treatment

Please add any supporting comments

Wound care

Please add any supporting comments

Dental care & treatment (e.g. dentist)

Please add any supporting comments

Prevention of oral health problems (e.g. toothbrushes, fluoride toothpaste, education on oral hygiene etc)

Please add any supporting comments

Sexual & reproductive health

Please add any supporting comments

Welfare, housing & employability advice

Please add any supporting comments

* 9. What are the enablers that support your clients to take up harm reduction interventions (e.g. location, community engagement, premises/ facilities, partnership etc)?

123 Appendix 1 - Staff Survey * 10. What are the barriers or things that discourage your clients from taking up harm reduction interventions?

124 Appendix 1 - Staff Survey

Health Needs Assessment of people who inject drugs (PWID) , 2017

New and innovative harm reduction interventions for your clients

* 11. What extra harm reduction interventions or services do you think should be provided in Edinburgh that currently are not?

More options for out of hours injecting equipment provision (IEP).

Supervised injecting rooms.

More availabilityof "low threshold" methadone prescribing in localities

Heroin assisted treatment.

More regular contact with professionals for people on ORT

IEP vending machines

Home delivery of IEP

More written information & advice for PWID

More motivational interventions to help people change their injecting behaviour

In some groups increased emphasis on smoking instead of injecting opiates

None of the above

Other (please specify)

* 12. From Edinburgh's population of PWID, who would benefit most from the interventions you selected above and why?

125 Appendix 1 - Staff Survey * 13. Are there any additional harm reduction interventions that you would like to provide to PWIDwithin your own service? Please select from below.

Safer injecting advice and information

Injecting Equipment Provision (IEP)

Opiate replacement therapy (ORT)

Take home naloxone (THN)

Dry blood spot testing (or venepunture) for BBVs

Active support for people to complete assessment & treatment for BBVs

Dental care (e.g. dentist)

Prevention of oral health problems (provision of tooth brushes & fluoride toothpaste, education on oral hygiene etc)

Sexual & reproductive health

Wound care

Rapid access to ORT for higher risk clients (e.g. low threshold methadone programme)

Increased access to GP care

Employability & welfare advice

Motivational & psychosocial interventions

Outreach (e.g. IEP, BBV testing & support for BBV care & treatment)

Employability, housing & welfare advice

None of the above

Other (please specify)

126 Appendix 1 - Staff Survey

Health Needs Assessment of people who inject drugs (PWID) , 2017

Workforce Development

* 14. What additional training would be useful to increase your confidence and competence in the delivery of harm reduction interventions with PWID?

Understanding client trauma & how to respond in practice

BBVs & dry blood spot testing

Understanding addiction & recovery

Chem sex (the use of specific drugs to facilitate & enhance sex most commonly between men who have sex with men which can include slamming/ injecting)

Motivation & behaviour change skills

Performance & image enhancing drug use

Sexual health & substance use

Risks related to groin injecting

Safer injecting practice

None of the above

Other (please specify)

127 Appendix 1 - Staff Survey

Health Needs Assessment of people who inject drugs (PWID) , 2017

Any further comments

15. Please comment on anything else you wish to tell us about harm reduction in services across Edinburgh.

128 Appendix 2 - Health Needs Assessment Conversation Cafe

HEALTH NEEDS ASSESSMENT CONVERSATION CAFE

Wednesday 31st May 2017 - the Quaker Meeting House

Introduction

A conversation cafe was held as the final process of consultation with strategic leads and service providers for the health needs assessment. The aim of the event was to bring together key stakeholders who work with PWID to • Update them on the evidence and results of the health needs assessment

• Provide the opportunity to review the recommendations and

• Agree key actions and a potential framework for implementation

Background

Sixty three people attended the event from a wide range of services and organisations which represented both Third and Statutory sectors. Invites were targeted at agencies which are essential in the provision of harm reduction interventions at locality level such as Recovery Hubs, Substance Misuse Clinical teams, GPs, Social Work and Pharmacists plus city wide services such as Streetwork, Harm Reduction, the Scottish Prison Service and Police Scotland.

Process

To enable discussion between locality teams and wider, participants were grouped as far as possible with others from the locality they work in. Those who are city wide were allocated across groups where it was felt their experience and expertise of particular approaches or services would contribute to how recommendations might be implemented at a locality level or links to specific services made. For example the Wound Care Nurse suggested ways to upskill staff across the city without the need to replicate the central wound clinic and Pharmacists highlighted their role with drug users in relation to general care and drug treatment.

The concept and principles of the world cafe (aka conversation cafe) supported the aim of engaging the stakeholders in a way that open and honest discussion was had to consolidate the draft recommendations. There were six main recommendations so each one featured on a separate table. The groups rotated around all the tables to enable them to consider each recommendation and the evidence base from which it was developed. There were two facilitators at each table who stayed there for the duration. This enabled them to hear ideas or themes from the start which became richer as the session progressed. Prior to the event they were given a brief about the key principles and how to host each conversation. 129 The following seven World Café design principles are an integrated set of ideas and practices that form the basis of the pattern embodied in the World Café process

1. Set the Context

2. Create Hospitable Space

3. Explore Questions that Matter

4. Encourage Everyone’s Contribution

5. Connect Diverse Perspectives

6. Listen together for Patterns and Insights

7. Share Collective Discoveries

World Cafe Design Principles (http://www.theworldcafe.com/key-concepts- resources/design-principles/) Participants were encouraged to actively contribute verbally or through notes and/ or doodles on the paper tablecloths. The same questions were posed for each recommendation and collated after the event. 1. Which recommendations do you think are the most important?

2. What might the next stage of development be and who do you think might lead on the work? (which partners should be involved? SU involvement) 3. What do you think are the opportunities/ challenges with providing some of these recommendations? (do we need to change the way we work, where we work from, skill set of the service provider) 4. In relation to this area (e.g. OST) is there anything missing? Following six rounds of facilitated discussion the groups were asked to spend 20 minutes reflecting on the morning without a facilitator and to define three things that had emerged from the information and/ or event for them. Any emerging issues or gaps were then fedback by each group after lunch.

Feedback

Overall the feedback was positive about the content of the recommendations with suggestions of what should take priority, what could be implemented immediately, where bits of work could be directed and which agency could lead. Gaps that were identified were

a) Lack of interventions that would impact on drug using cultures- nothing to address stigma of injecting or attitudes towards injectors. b) The involvement of active drug users as influencers.

c) There are no gender specific recommendations.

130 d) The person’s experience and measurement of widespread adoption of a person-centred approach. e) Retention in OST does not mention discharge from services of complex service users The following table sets out the recommendations and the facilitators, along with the key headlines from each table drawn from the participant responses.

Table Recommendation & facilitators no. 1. Improve access to & retention in opiate substitution therapy (OST)

(Tracey Cochrane & Paul Novak) • Local system standards & KPI’s are important to base further work on improving access to & retention in OST. • Review standards which should include the discharge policy.

• Non medical prescribing should be the next stage of development

• Meeting the HEAT targets is becoming detrimental to the care of the patient. Person centred care should be provided not one size fits all. More opportunities need to be provided for rapid access. Learn more from service users. • Safer injecting rooms & heroin assisted treatment is still missing from this discussion 2. Provide harm reduction as part of all service contacts with PWID (Jim

Shanley & Jill Smith) • Support for services to do more outreach to ensure they are reaching the service users in places that they are accessing regularly (e.g. enhanced pharmacy project) • More integrated working across services, including the liaison role for the acute sector • Harm reduction interventions can be provided better with more consistent training for staff, protected learning and access to appropriate equipment and locations from which to provide it safely for the staff, service users and the general public. • Person centred approach to meet the needs of all PWIDS e.g yp, IPEDS & those only accessing pharmacy 3. Reduce losses & missed opportunities for the testing, care & treatment

of BBV (David Williams & Hilda Stiven) • A BBV dashboard would provide a way of pulling information together.

Currently not much interest but if it can be shown to be effective in 131

feeding back data & highlighting the needs of patients then it is

considered to be useful.

• Lack of information and understanding amongst service providers and service users about services that are currently available to support people into HCV treatment and what HCv treatment now involves. Not all practitioners are prioritising HCV testing. This all demonstrates the need for training and information to be made available across hubs to reach workers and the patients. Targeting people in long term recovery should also be considered. • Relationships with key workers are key, so priority should be given to build capacity in current workers to engage SU with testing & into treatment as they already have the relationship with the SU instead of bringing in new services (e.g. RIDU outreach, phlebotomists) • The BBV team are useful for testing but its hard to co-ordinate patients with the BBV team especially when hubs operate across different locations. Regular focussed sessions like HRT do might be a good way forward as intense bursts seem to be better than little and often. • Explore non medical prescribing of HCV treatments within pharmacies

4. Provide more opportunities for clients to access support for general

health & wellbeing (Claire Glen & Sheila Wilson) • Increase the skill mix- There is a recognition that staff in the hubs need to be upskilled to offer more support for general health in current services as service users are lost when referred on. Ideas such as respiratory assessments, smoking cessation and wound care were given as these were the main concerns along with poor mental health • There should be flexibility within teams where there are vacancies to look at staff who can provide basic health care such as a healthcare assistant who can rotate between locality teams. If a “Keep Well” model was used it would need to be reinvigorated & tailored more to the needs of PWID and ensure the workers proactively engaged with SU not just waiting for appointments. • There was support to make the wound care nurse a substantive post who would remain a central post. This would increase capacity to facilitate wound care training for locality staff across areas. • Use the SMD quality improvement group to develop ideas.

• Have better links with services who will be seeing PWID regularly, especially pharmacists or receiving specialist areas such as 132

Respiratory. Lots of support for outreach to pharmacies to provide an

enhanced service. 5. Strengthen services for vulnerable groups (Dave Carson & Sabina

McDonald) • Service provision needs to be reviewed – can NOT offer one service to all – it must be flexible and suit need • Data collection needs to be improved and/ or better shared/ communicated as well as better understood • The role of peers needs to be further explored/ expanded

• Integration services, in particular Addictions Services and Mental Health Services is required – can NOT work in isolation of each other – need to join up/ communicate/ information share as appropriate • The needs of older drug users and female drug users needs to be further explored and understood as do the needs of children and families of people who inject drugs 6. Establish a multi- disciplinary & multi-agency plan for quality (Nick Smith

& Chris Stothart) • There is support for a dashboard, the development of service

standards & KPIs to ensure quality services are provided. This should include competencies for non-clinical staff to ensure everyone is working to a high standard. There needs to be a central service/ person who oversees this- an overarching group with the 4 Edinburgh localities, 3 Lothian localities, and 2 prisons – who can represent all areas and share resources/information across the areas would be useful. Service standards should be flexible enough to support innovation and be patient centred because the PWID population is not a homogenous group. • A skills based/ workforce audit should be conducted to look at the assets we already have in the workforce & determine what the gaps are. • Data collection and dissemination should be a two way process.

Service providers and SU should have an understanding of why the data is required to improve buy in. Data should also be fedback to services to enable quality improvement. • Coordinated Learning & Development sessions; protected learning time for a range of stakeholders to attend: multi-agency, city- wide/locality, GPs; specific training • A challenge exists with how systems currently don’t talk to each other. 133 Is it possible for them to interface somehow to inform the development of a dashboard? • Need for a new system across all agencies, or just a central place that compiles all the data? • Need to ensure we are consistently collecting the right information whilst keeping in mind how this will improve the patient journey and how we measure the impact of the dashboard and the training that is provided.

Evaluation

The event evaluated very positively and the majority of participants found the conversation cafe useful. All respondents apart from one agreed that a similar event in a years time would be helpful to bring everyone together again and review progress against the agreed actions.

All of the evaluations said that the conversation cafe updated them on the evidence and results of the health needs assessment. 41% completely agreed that they had been given the opportunity to review the recommendations, 25% partly & 33% not sure.

Participants were less clear that key actions and a framework for implementation was agreed on the day with the majority saying they only partly agreed with this statement. It was clear from feedback that having the time and headspace away from work to network with others was valuable for most, alongside hearing about the evidence base and stakeholder feedback. “I really liked that there was a broad cross section of staff from across services. This bought with it a wealth of information and many ideas to discuss. It was a pleasure to be part of this process.” It was a new experience for some and the opportunity for all of the key stakeholders to come together happens infrequently. Participants also valued the opportunity to comment on the recommendations and share their ideas for moving forward. The main areas for improvement that were suggested were to reduce the size of the groups and use a bigger room as space was restricted. Providing the questions before the event was also felt to be a more efficient use of time & enable participants to formulate better answers. All of the evaluations indicated a willingness to be involved with the implementation of the recommendations with some work already underway.

134 “I would like to get involved with putting suggested harm reduction improvements in to the voluntary provider services that CGL provides.” “Any way you like. Currently supporting the take home naloxone programme. Would like to do some data capture with that.” “Would be keen for Waverley Care to be involved in how we can support any of the recommendations relating to our work with people living with or at risk of BBVs.” The main ways in which people would change their practice as a result of discussions at the conversation cafe were knowing where to refer clients and training they would access or ask to be provided.

Next steps and actions

• Finalise the recommendations based on the feedback at the conversation cafe • Collate the feedback from the conversation cafe

• Establish plans & leads agencies for the work going forward

• Implement small tests of change & evaluate

135 Appendix 3 - Edinburgh Harm Reduction Provision by Locality

Locality OST IEP BBV THN Housing and social

North Triage: daily NE Hub, General IEP: daily BBV testing: daily Provision: Daily at Sexual health: : East weekly Milton Rd pharmacy provision except weekends NE each triage drop in condoms available at Edinburgh Surgery and East (Mon-Sat) Hub. drop ins daily Neighbourhood 2 pharmacies A monthly workshop weekly NE Hub drop

Centre HCV assessment: is run focusing on in for sex workers weekly NE Hub Enhanced IEP: daily THN and overdose plus direct referral Assessment: daily except weekends NE prevention route to Chalmers booked as above Hub; weekly Housing & benefits: Prescription: by Craigmillar Pharmacy twice weekly NE Hub appointment Oral health: referral Specialist Counselling: weekly by referral to Simpson House

136 Locality OST IEP BBV THN Housing and social

North Triage: daily NW Hub, General IEP: daily BBV testing: Provision: daily at Sexual health: West weekly South pharmacy provision currently unavailable each triage drop in condoms available at Edinburgh Queensferry & (Mon-Sat) in the hub due to drop ins daily fortnightly Eyre training issues. Third Housing & benefits: Medical Practice 2 pharmacies sector staff are Ad-hoc provision but waiting to be trained support clients to Assessment: daily Specialist IEP: daily on DBST. Available access CAB or booked as above. except weekends weekly in Pennywell Granton Information NW hub Resource Centre Centre as required Prescription: by appointment only Oral health: referral Specialist Counselling: weekly by referral to Simpson House

137 Locality OST IEP BBV THN Housing and social

South Triage: SW Hub 3/5 Enhanced IEP: BBV testing: every Provision: Offered Sexual health: West days per week,ELS available daily at SW Wednesday BBV 3x/week at referral Edinburgh House 2/5 days per hub (Westerhailes team at WH Healthy Westerhailes Healthy week Healthy Living Living Centre- Living Centre. Housing& benefits: Centre), ELS House testing, immunisation Limitations with other Referral to CHAI Assessment: daily planning to provide / HCV assessment service locations. booked as above “one hit” kits and referral for Oral health: referral Prescription: by treatment,DBST in General IEP: 3 Specialist appointment hub by appointment pharmacies only due to staff Counselling: referral to Simpson House capacity South Triage: twice weekly Specialist IEP: BBV testing: Provision: Daily at Sexual health: East South Neighbourhood available Spittal available daily at Spittal Street. To all condoms available Edinburgh Centre, twice weekly Street drop in, Spittal Street drop in. clients of the hub and Spittal Street, at drop ins at south Sexual health: BBV assessment: neighbourhood office weekly women’s Assessment: daily available fortnightly clinic, otherwise booked as above Enhanced IEP (BBV Team) at Spittal Street Housing& benefits Prescription: by Enhanced IEP has :referral appointment been delivered within DBST difficult in other pharmacy settings by locations because of Oral health: referral rd 3 sector staff as a lack of appropriate part of a larger pilot. storage. Specialist A continued Counselling: referral presence across all to Simpson House

138 Locality OST IEP BBV THN Housing and social

pharmacies in the South is being developed

General IEP: 4 pharmacies

City wide Low threshold See above re South See above re South See above re South services methadone East Edinburgh East Edinburgh East Edinburgh programme(provided Housing& benefits: to high risk injectors weekly who require intensive input): daily Oral health: daily

Specialist Counselling: referral Assessment: drop in on to Simpson House weekly

Prescription: By appointment

139 Locality OST IEP BBV THN Housing and social

Edinburgh Service for people The Access Practice BBV testing: Provision: daily Sexual health: Access who are homeless is currently co- available daily Condoms provided Practice and cannot register located with the daily at drop in with their local GP Harm Reduction BBV assessment & practice team at Spittal Street. treatment: available This is a temporary weekly Assessment: daily arrangement. Housing& benefits: Buddying support referral to transition Prescription: daily However this has available to for employabiltiy. enabled Specialist accompany client to Welfare adviser in Fast access: IEP to be provided hospital service 3x/ week available daily for from the same risky injectors building.

IEP is also provided Oral health: referral to homeless to Chalmers 3x half individuals via the days/ week Streetwork service. Specialist Counselling: referral to Simpson House

140 Appendix 4 - Drug-Related Death Definition The 'baseline' definition for DRD in Scotland is derived from the UK Drugs Strategy and covers the following cause of death categories (ICD10 codes are given in brackets):

a) Deaths where the underlying cause of death has been coded to the following sub-categories of 'mental and behavioural disorders due to psychoactive substance use': i. opioids (F11); ii. cannabinoids (F12); iii. sedatives or hypnotics (F13); iv. cocaine (F14); v. other stimulants, including caffeine (F15); vi. hallucinogens (F16); vii. multiple drug use and use of other psychoactive substances (F19).

b) Deaths coded to the following categories and where a drug listed under the Misuse of Drugs Act (1971) was known to be present in the body at the time of death: i. accidental poisoning (X40 - X44); ii. intentional self-poisoning by drugs, medicaments and biological substances (X60 - X64); iii. assault by drugs, medicaments and biological substances (X85); iv. event of undetermined intent, poisoning (Y10 - Y14).

A number of categories that may be regarded as ‘drug-related’ deaths are excluded from the definition because the underlying cause of death was not coded to one of the ICD10 codes listed above. Examples of deaths which are not counted for this reason are:

• deaths coded to mental and behavioural disorders due to the use of alcohol (F10), tobacco (F17) and volatile substances (F18); • deaths from AIDS where the risk factor was believed to be the sharing of needles; • deaths from drowning, falls, road traffic and other accidents (except the inhalation of gastric contents, or choking on food) which occurred under the influence of drugs; • deaths due to assault by a person who was under the influence of drugs, or as a result of being involved in drug-related criminal activities; • deaths due to infections from contaminated drugs, such as Clostridium noyvi or anthrax. • deaths where a drug listed under the Misuse of Drugs Act was present because it was part of a compound analgesic or cold remedy.

• Additional Lothian case review exclusion criteria: intentional or accidental overdoses involving only controlled drugs prescribed to the individual in cases were there had been no previous history of substance misuse.

141