I’ve spent a lot of time in the past week listening, talking, and reflecting on issues of death, dying and bereavement. The primary reason for this is that the UK Commission on Bereavement launched its final report on Tuesday in Westminster and prior to this I chaired a session at the SNP conference on the topic whilst on Thursday a virtual event brought a huge number of people together to take part in Scotland’s Bereavement Summit and participate in great discussions and sharing.

Regular readers of this blog will know that I have over time written a lot about bereavement and have been very honoured to have served as a Scottish Commissioner on the UK Commission.

The report which was launched on Tuesday is one of the most comprehensive explorations of the nature of bereavement within modern British society not least in the light of the Covid pandemic. It is rooted in the lived experience of many people not least those who gave their time and inspirational insights as members of the Lived Experience Advisory Forum which worked alongside the commissioners. Some of those voices were present at the launch and their shared stories of loss moved and motivated the audience.

The Commission has made numerous recommendations rooted in a robust academic and sociological analysis of what its research had discovered. It strongly articulates the need for society to see bereavement support as a public health issue, avoids pathologising grief but yet articulates the pain and distress experienced by those whom we are failing as a society. I would encourage you to spend some time reading its findings. It is entitled ‘Bereavement is everyone’s business’ which very much sums up its focus. For today I want to reflect on one of its arguments which is of particular personal importance.

The Commission report is the first one of such depth and robustness, both academically and in terms of lived experience, to declare that the right to access adequate and appropriate bereavement support should be recognised as a human right. Again, I have reflected elsewhere why this could become the case legally not least as Scotland seeks to incorporate a right to health within a developing new human rights act. There is I believe a very real opportunity for Scotland to take a pioneering lead here both legislatively and in terms of empowering people’s ability to access bereavement support. I hope it won’t be missed.

But I want to respond to some comment as to what difference such a human right might make in practice.

Human rights are first and foremost about human relationship – our modern articulation of them is not least because of the traumas of the past when difference and distinction became the vehicle for hatred and holocaust. Human rights are there for the best and worst moments of our relating to one another – they are for the ordinary and extraordinary realities of living and loving. There is nothing which is more fused with the relational than the moments of our dying and the experiences of loss and emptiness, of connection and togetherness, of isolation and rejection, of tear and laughter, that encompasses the grief journey of so many. Yet the Commission’s report indicates that for 40% of those who sought support in their grieving that that support was not there for them; it notes that nearly 50% of children and young people did not find adequate support in their place of education, whether school, college or university; it further evidences that a quarter of those who sought support from family did not find solace. So, whether through formal or informal mechanisms we are clearly coming up short in offering and receiving the bereavement support we need to grieve in a manner which attends to our humanity. That may have a lot to do with societal stigma and a contemporary cultural divorce from death and dying, but it clearly is something we must address. A human right to bereavement support based on the right to be healthy and with a holistic concept of wellbeing, would help to root priority in declaring that our bereavement health is as intrinsic to our humanity as any other aspect of health and citizenship.

Such an elevation of priority and value would assist in the ongoing and at times shocking stigmatisation of death and bereavement. The report has shone a light on a shaming reality that so many on the grounds of poverty or knowledge, of race or ethnicity, or age and disability, find it much harder to access the bereavement support they need. The compounding of heartache because of cultural taboos which silence support and comment simply must be challenged. A human right to bereavement support would help to elevate the needs of all to ensure equality of access, fairness in provision and non-discrimination in delivery. We cannot continue to tolerate provision which treats some less favourably and which for many results in not moments or months of psychological hurt but in years of aching dislocation.

It is also important that people recognise that regardless of their circumstance or fortune that when they need support to deal with the loss of someone important to them that such support is there as of a right and most importantly that they can claim that right. The realisation of a human right to bereavement support will take time to reach fulfilment and included in that journey will be increased awareness of what is available, improved access which is appropriate, and an urgently needed societal discourse and debate on the nature of death, dying and bereavement. The silence of death and grief avoidance we so often witness in contemporary culture ill serves those who when faced with death especially sudden and tragic loss have no language with which to speak its pain, no resource and knowledge to understand what is happening, and no-one to turn to as they walk their journey.

Lastly and no less important is that articulating bereavement support as a human right necessitates the requirement to monitor and evaluate progress on the part of public and governmental bodies. Human rights do not exist in a vacuum – there are mechanisms (albeit sometimes inadequate) to ensure that State actors and governments are held to account for policies and behaviours which either act against the fulfilment of a right or progressively help to realise that human right. The recommendations within the UK Commission report are the baseline for the creation of a community and society which roots the human right to bereavement support as a marker of our citizenship. Of necessity this also includes the requirement to identify adequate resource, budget allocation and fiscal priority to ensure that the human right to bereavement support is achieved. This amongst many other reasons is why the UK Commission is calling for at least 0.79 pence to be spent per annum on each bereaved person. Rights are only achievable if appropriate resource is allocated not in the absence of fiscal and budgetary allocation. If we are to change both the nature of and access to bereavement support, to professionalise the response of all including employers and the workforce across so many sectors, then the bereavement support sector can no longer be holding out an annual begging bowl to receive the scraps of budget allocation like some Dickensian orphan but must be seen as a priority sector.

Human rights point to a better future and give agency and purpose to the journey to realise our individual and collective responsibility. This is not just for paid up politicians and policy makers – as the title of the report states – it’s everyone’s business.

The excellent Commission report is a starting point – but change only happens when words come off the page, statutes come down from the shelf, people stand in solidarity and say enough is enough – it is time to change and time to act. The thousands who are bereaved each year and especially those who are struggling with their grief deserve a society which listens to them, hears their pain, responds to their needs and offers adequacy of compassion, care and support. In no little way that is why bereavement support should be seen as an inalienable human right, as important to us as the right to physical or psychological health and wellbeing. The work for such change starts now.

Donald Macaskill

Last Updated on 15th October 2022 by donald.macaskill