Drug Deaths Taskforce response: cross government approach

4. Lived/Living Experience

Taskforce Recommendation: People with lived and living experience must be at the heart of the response to drug-related deaths. All responses to problem substance use must be co-produced or co-developed with them as they are central to the changes outlined. We recognise that the needs and views of those with living experience may be different to the needs and views of those with lived experience and therefore will need tailored approaches to their inclusion. It is critical that those with living experience have the support they need and that barriers to their recovery are removed. The knowledge and skills of those with lived experience should be utilised to their full potential.

Putting the voices of lived and living experience at the heart of what we do is a key cross cutting priority of the National Mission.

This means that people affected by problem substance use need to be meaningfully involved and have the right to participate in shaping the design and delivery of services. Such engagement is a key part of a human rights-based approach to policy and service delivery.

National Collaborative

In January 2022, the First Minister invited Professor Alan Miller, an internationally recognised Human Rights expert, to chair and build a National Collaborative. The National Collaborative will be a dynamic process involving people with experience of problem substance use and their families, as well as people responsible for delivering support services. It will develop and apply a human rights-based approach in order to:

• empower people affected by problem substance use to enable their voices - and their rights - to be acted upon in policy and decision-making.
• set out how the rights to be included in the forthcoming Human Rights Bill can be effectively implemented to improve the lives of people affected by problem substance use.

The National Collaborative will develop a Charter of Rights for people with, or affected by, problem substance use as well as an Implementation Framework. This will be co-designed through interactions between people affected by problem substance use (including families), service providers and government and will practically apply the rights within the Human Rights Bill such as the right to health. The right to health is not only about healthcare but also includes the right to positive determinants of good health such as housing, education, healthy environment, social networks.

A human rights-based approach is underpinned by the PANEL principles which are:

• Participation: People have a right to be involved in decisions that affect their rights. Participation must be active, accessible and meaningful.
• Accountability: There should be monitoring of how people's rights are being affected, as well as remedies when things go wrong.
• Non-discrimination and equality: All forms of discrimination must be prohibited, prevented and eliminated. People who face the biggest barriers to realising their rights should be prioritised.
• Empowerment: Everyone should understand their rights and be fully supported to take part in developing policy and practices which affect their lives.
• Legality: Approaches should be grounded in the legal rights that are set out in domestic and international laws.

Involvement of people affected by substance use in local decision making

As well as involving people affected by substance use at a national level, the ambition is that there are effective and meaningful ways for people to be involved in decision making at a local level.

£500,000 of the funding given to Alcohol and Drug Partnerships (ADPs) is allocated to increase participation of people affected by problem substance use in all stages of prioritisation, planning, funding, implementation and monitoring of services through Lived and Living Experience panels and other community groups.

Government also funds organisations like Scottish Drugs Forum (SDF) and Scottish Recovery Consortium (SRC) to mobilise community networks and ensure people with lived and living experience influence service developments, service delivery, policy and strategy development.

The National Collaborative will also support ADPs to develop and apply their own approaches to involving people affected by substance use through panels, reference groups and other community engagement structures. This will involve sharing good practice and working through some of the shared challenges for example on remuneration, support and training, accessibility, and inclusion of a broad range of experiences.

4.1 Involving people with lived experience across government

As members of the Open Government Partnership^[29], the Scottish Government is committed to the values of openness, transparency, accountability and citizen participation. These are embedded in policy development, community planning duties and healthcare quality improvement and management processes.

People affected by problem substance use need to be involved in the development of wider policies and strategies. This reflects the fact that unless full consideration is given to people's experiences policy and implementation will not be as effective as it needs to be. People's experiences do not fit neatly in one policy area and so our engagement and participation must take into account the vicious cycles of problem substance use, homelessness, lack of income, unsafe environments, lack of access to education and other basic services.

There are some good examples of this already happening. For example, people with experience of problem substance use are contributing to the development of the Human Rights Bill and the National Care Service. We will continue to work with partners across government to ensure that people affected by substance use are meaningfully involved in a trauma-informed way.

Key actions

• The National Collaborative will develop a Charter of Rights for people with or affected by problem substance use as well as an Implementation Framework to set out how forthcoming human rights can be effectively realised for people affected by problem substance use.
• The National Collaborative will support participation in local decision making by sharing good practice and working through some of the shared practical challenges.
• We will work with partners across government to ensure that, where appropriate, people affected by problem substance use are included in the co-production of policy and strategy development.