Getting human rights right for all - Irene Oldfather

Too often it is those in our most deprived and marginalised communities, who sometimes seem the furthest away from legal protections around the quality of life that they can and should enjoy, who find the greatest difficulty being heard.

It is really important to know, understand and share that human rights are not a hypothetical academic conversation with no grounding in the real world. They are in fact standards by which we can right some of the wrongs in the system while empowering, ensuring accountability and participation and emphasising equality for those in need.

The appointment of the Scottish Human Rights Commissioner, Professor Alan Miller, in 2008 ushered in a new era in Human Rights in Scotland and put a spotlight on Scotland’s approach to implementation of human rights in our lives. One of his first tasks was to work with the Parliament’s Cross Party Group on Alzheimer’s, chaired by myself and supported by Alzheimers Scotland, to produce a Charter of Rights for People with Dementia and their Carers. It’s significant because it was the first ever example of the UN PANEL approach being implemented in Scotland.

I think it’s generally agreed that it was an approach that worked, sitting alongside the National Dementia strategy and a range of implementation tools such as Dementia Champions and nurse consultants. The parallel workforce plan ensured that the workforce at all levels was appropriately trained to care for people with dementia, ensuring person-centred approaches. The overall package put people with lived and living experience of dementia at the very heart of policy and service development, ensuring they were empowered to claim and advance their rights.

Irene Oldfather is Director at the Health and Social Care Alliance Scotland (the ALLIANCE) and was formerly a Member of the Scottish Parliament.

More recently, the worrying number of people in Scotland who have died from drug-related deaths is not just an avoidable harm, it is a human rights issue, as the Drugs Death Taskforce report describes. The rights of people with experiences of problem substance use are not currently being protected, respected or fulfilled in the way that many other people enjoy.

The call for a new National Mission to reduce drug-related deaths and harms, whereby an action plan to respect, protect and fulfil the human rights of all of those experiencing problem substance use is put in place, has become a national priority. This proposed Charter of Rights will be a tangible output to accompany the proposed Scottish human rights legislation to be introduced in this Parliamentary session.

The National Collaborative will follow a similar model to the Dementia one, with a call for evidence from communities and those with lived and living experience in the next weeks. The ensuing work will coproduce a legally enforceable Charter of Rights for people with problem substance and alcohol use which will include the right to health. In its implementation it will demonstrate how rights-based approaches can change communities and save lives. In addition, it will place responsibilities on duty bearers to action those rights.

The ALLIANCE has a history of supporting rights-based approaches which was no more evident than in our work on the Covid-19 inquiry. Our engagement with a wide cross section of members demonstrated a range of concerns around Do Not Resuscitate (DNR), lack of information, poor and inconsistent communication with people about their health and wellbeing and stigma and discrimination – not least on the basis of age and other protected characteristics.

Last year, the ALLIANCE commissioned social research to undertake a piece of qualitative research exploring human rights in health and social care in Scotland. The report explores four case studies: what next for health and social care in Scotland; learning from the pandemic experience; human rights in healthcare education; and reflections and aspirations for Scottish National Action Plan2 (SNAP2). The report, launched at the end of February, will be used to inform the ALLIANCE’s wider work on human rights policy. The work calls for participation to be at the heart of service and policy design, ensuring respect for rights across both thematic and geographic communities.

Putting these rights-based programmes into demonstrable resourced actions, accompanied by implementation plans which are audited and monitored by those who have first hand experience, will be a necessary first step towards ensuring that we consign inequalities and stigma to the dustbin of history.

Irene Oldfather, Director of Strategic Partnerships and Engagement Health and Social Care Alliance Scotland (the ALLIANCE)