User Involvement: Case Studies
A major peer research survey carried out by service user volunteers with Scottish Drugs Forum helped to drastically reduce treatment waiting times in Ayrshire and Arran, paved the way for strategic changes to local service provision and improved volunteers’ vocational skills.
Prescribing services in Ayrshire and Arran had been under severe pressure because of financial restrictions on methadone prescribing.
Scottish Drugs Forum was commissioned by the local Alcohol and Drug Action Team to look into the impact of substitute prescribing/methadone – or waiting for it – had on people.
A team of peer research volunteers from Scottish Drugs Forum’s National User Involvement Group took part in the development of a structured questionnaire, working alongside Scottish Drugs Forum Research and User Involvement Development staff and survey steering group members from the NHS, local authority and ADAT.
The volunteer researchers recruited and interviewed 82 service users and 10 family members for the survey.
The survey revealed that many people had been waiting for assessment for more than 18 months, and that many had increased their drug use while waiting – polydrug use was common.
People thought that methadone was effective in helping them deal with their problems, reducing drug use and improving physical and mental health, finances and relationships.
However, waiting too long for treatment led to increased drug use and criminal activity, decline in physical and mental health,increasing debts to dealers and relatives and jeopardised employment prospects.
Informing people of their place on the waiting lists and providing regular contact to see what other support could help meantime were among the suggestions in the survey report.
The research report also recommended providing regular reviews, health checks and structured support to assist clients who did get on a methadone programme to control their drug use and move towards – and maintain – drug free status.
Pat Lerpiniere, Services Manager, NHS Ayrshire and Arran, said: “We commissioned Scottish Drugs Forum to carry out this work because of their expertise and, from working with them in the past, we knew they were reliable, independent, objective and flexible to work with. They would also be able to deal with any issue that arose out of working closely with people in difficult circumstances.
“The survey report was a good quality product, which we were very pleased with because it validated our understanding of several issues and helped us to understand where people were.
“There was strong evidence that people wanted to have a single treatment – methadone – and that we need to offer support to people so they can do things for themselves and should not have to wait for the availability of a particular treatment.”
The ADAT was able to use this survey report as part of a prompt to its Board and the Scottish Government which – along with the anthrax outbreak on 2009/10 – led to a £500,000 increase in funding. As a result it was been able to reduce its waiting list for assessment from two-and-half-years to four weeks in less than a year.
Katrina, one of the Scottish Drugs Forum volunteers who conducted the research, said: “It was very satisfying to be involved in this project – I felt people could open up to me more than they would have done to a worker.
“Taking part taught me how to take a professional approach to this kind of work and it gave me confidence, especially when I got feedback that I was getting the kind of information that was required.”
Scottish Drugs Forum National User Involvement (NUI) volunteers were involved in two separate projects for the anti-poverty Evidence Participation Change (EPIC) Project, a four year project funded by the Big Lottery Fund and delivered by the Poverty Alliance.
With support and assistance from Scottish Drugs Forum NUI staff, volunteers developed one of six key themed evidence sessions for EPIC’s Scottish Assembly for Tackling Poverty. Preparatory work for the Addictions and Poverty session involved taking part in six in-depth discussions with The Poverty Alliance – which is managing EPIC – on the issues they had encountered or are currently facing.
This evidence was presented at the Assembly to an expert panel, which resulted in the Assembly’s call for:
- More Scottish and UK Government investment in communities because tackling poverty is a key way of addressing addiction issues
- Scottish Government action to tackle stigma because drug addiction is the result of the problem, not the problem itself
- Processes to ensure more participation by people with experience of addiction in the planning of services
NUI Group work also contributed to The Poverty Alliance’s response to the Scottish Government’s consultation on the Devolution of Community Care Grants and Crisis Loans, part of the UK Government’s wider welfare reforms.
NUI volunteers also undertook training on community research and carried out surveys with people they knew. Three volunteers also took part in a Scottish Government focus group to give their own views.
The submission highlighted that benefit levels were not enough so the Social Fund was the only form of affordable credit available, loan repayments were set too high, applying for community care grants and crisis loans is generally a negative experience. It also called for a bigger Social Fund budget to provide an accessible alternative to high cost lenders and loan sharks.
The Poverty Alliance says that the contribution of Scottish Drugs Forum volunteers and other people with experience of poverty had helped to fill gaps about the service user perspective in existing research.
Scottish Drugs Forum National User Involvement Group (NUI) volunteers took part in this ground-breaking move using peer researchers to conduct a “mystery shopper” exercise as part of an independent customer satisfaction survey on needle exchanges across the NHS Greater Glasgow and Clyde area.
Our volunteers conducted 16 mystery shopping exercises at local Pharmacy and Fixed-site Injecting Equipment Providers (IEP) and also conducted 60 in-depth qualitative questionnaires with service users using the sites.
John Campbell, Glasgow Addiction Services Improvement and Development Manager for IEP services, said: “Using Scottish Drugs Forum user involvement volunteers as peer researchers and mystery shoppers has proved to be invaluable.
“Recommendations for improvement already acted upon include providing ‘water for injection’ to the homeless population through our partnership backpacking outreach service and raising staff’s awareness of the amount of equipment that can be provided including secondary distribution.”
Volunteers went on to deliver a workshop on this work at Scotland’s first national needle exchange conference.
Conference organisers Frontier Medical Group thanked our volunteers for “their excellent presentation on the Glasgow NX customer satisfaction survey for the inaugural Needle Exchange conference in Scotland. It was a brilliant job and the feedback we received was great.”
Two Scottish Drugs Forum User Involvement volunteers helped with groundbreaking work which is saving the NHS more than £220,000 a year.
Scottish Drugs Forum National User Involvement Group volunteers were invited – through Glasgow Addiction Services – to take part in a major national review of procurement of injecting equipment by the National Procurement team within NHS National Services.
The initiative, undertaken as part of the Hepatitis C Action Plan, was a first for Scotland. It aimed to standardise equipment and reduce costs through procuring injecting equipment – and Hepatitis C medicine – on a Scotland wide basis.
The volunteers were involved in the evaluation of the equipment.
The efficiency move has resulted in savings of £221,000 on the £1.5M annual spend on injecting equipment – 220% greater than officials had initially estimated.
And it also led to improvements in how needle and syringe packs are dispensed.
By having separate packs for intravenous drug users and sports/steroid users, information and guidance – as well as appropriate contents – can be directed to the correct users.
“The specification development ensured that packs were colourcoded in order that they could be easily identified,” says the NHS National Services National Procurement Team.
“This process re-engineering and significant change has led to remarkable economies of scale and service users being able to access the same pack anywhere in Scotland.”
The cost-cutting innovations led National Procurement to win a Government Opportunities (GO) Excellence in Public Procurement Innovation/Initiative of the Year award 2010/2011.