Towards a Human Rights Charter for Bereavement in Scotland Dr Donald Macaskill 5th June 2019

Issues facing bereavement support in Scotland. Why human rights? Developing a coalition of interest. Framing human rights in the context of bereavement Next steps. 5th June 2019

Bereavement issues Why are there no nationally recognised bereavement standards in Scotland? Why is bereavement not an explicit part of Public Health Scotland and the Health and Social Care Delivery Plan? Many related policy areas appear to have a degree of disconnect (e.g. the Independent Age Report 2018 states ‘where policy does exist, it is disparate and unconnected. The NHS, local authorities, independent social care providers and the voluntary sector (including hospices) all play a role in bereavement support, but they are not well integrated, and none has overall authority’) 5th June 2019

Bereavement issues There is a lack of recognition of, and support for, carers who support people living – and dying – of dementia. The impact on a carer’s mental and physical health as they grieve for the person who they are slowly losing can be devastating – but often not acknowledged until after they die. There needs to be an honest conversation about the adverse impact inadequate bereavement support (professional and personal loss) is having on workforce recruitment and retention. Although not articulated, there’s a general sense that the provision of bereavement support is always somebody else’s responsibility, generating a lack of ownership 5th June 2019

Bereavement views Do we need an agreed working definition of bereavement? (e.g. bereavement does not just start at the time of death or after death but can be anticipatory and / or complex) Bereavement is not a subset of palliative care, rather it is an overarching concept of which palliative care forms just one section (bereavement includes all sudden deaths, pregnancy loss, suicide, sudden clinical incidents etc.) Scotland needs a core guiding set of bereavement related principles to support workforce development. There is no nationally agreed / structured bereavement training although there are many unconnected pockets of good practice 5th June 2019

Bereavement Rights Coalition includes representatives from: NHS Education University sector Cruse Scotland Chief Officers Group Care Inspectorate TIDE Sue Ryder Health Education Scotland Scottish Ambulance Service Scottish Care 5th June 2019

Bereavement - Why human rights? ...”recognition of the inherent dignity and of the equal and inalienable rights of all members of the human family is the foundation of freedom, justice and peace in the world” —Preamble to the Universal Declaration of Human Rights,1948 5th June 2019

Human Rights have at their core the recognition that all human beings have an equal moral worth and inherent dignity. 5th June 2019

First Minister Nicola Sturgeon: “The Scottish Government has been resolute in standing up for human rights, particularly in the face of the risks created by Brexit and the UK Government’s proposals to repeal the Human Rights Act. “However, it is vital we are not complacent and continue to push ourselves to do more to ensure human rights are embedded in everything we do. “We need to ensure our work on human rights makes a difference, helping people and communities to live with dignity wherever they are in Scotland, and whatever their circumstances.” 5th June 2019

5th June 2019

Human rights – towards realisation Dignity is inherent to our humanity About relationships as well as law UN Convention on Economic, Social and Cultural Rights 5th June 2019

Why a Bereavement Charter? 5th June 2019

The purpose of the Charter is to raise and spread awareness of bereavement and the importance of minimising unnecessary harm both for individuals who are bereaved, as well as for staff who suffer the loss of people they support 5th June 2019

Bereavement Charter outline The charter will be succinct – outlining statements but will be supported by additional underpinning Guidance for individuals, businesses, authorities and other organisations. The purpose of the Charter is to raise and spread awareness of bereavement and the importance of minimising unnecessary harm. It would help individuals who are bereaved, as well as support for staff who suffer the loss of people they support (we may have to think of this in a different way and identify both similarities and differences). 5th June 2019

Bereavement Charter outline We propose the development of a Bereavement Charter for Scotland informed by the PANEL human rights approach and structured around the National Care Standards principles – dignity and respect, compassion, be included, responsive care, support and wellbeing. The Health and Social Care Standards 2018 should be acknowledged as a foundation for the development of a Charter for bereavement, but which goes beyond health and social care in its rights articulation. Principles must acknowledge the impact of failings around bereavement on loneliness and social isolation, mental and physical health, financial and practical considerations, feelings and grief. 5th June 2019

Bereavement Charter outline We would hope the Charter would then be adopted by organisations and educational establishments to ensure that they met the principles contained in the Charter. Employers could use this to scrutinise their policies and procedures and identify if their current practice could amend their way of working. Both individuals and organisations could use these. The Charter should present a balanced approach between what to do and what not to do. It’s important to consider that this is part of a process because our proposal is not to create another guidance document 5th June 2019

Bereavement Charter next steps. Finalising of initial text by small group Development of human rights based Guidance Establishment of stakeholder engagement (autumn 2019) Focus groups and questionnaire Collective ownership and creation A national conference to launch – late 2019/early 2020. 5th June 2019

Bereavement Charter contact. bereavement@scottishcare.org 5th June 2019