National data had shown that death and dying were not talked about in the UK. People were unprepared for their own or close ones' deaths, they were not dying in their place of choice and health professionals were not raising the issue with patients and their families.
This inhibition around death was having a number of negative hits on society, affecting the quality and scope of support and care, and the choice for people to die where they want. 'Dying matters' was conceived to break the silence.
Originally launched in 2015, the campaign by Leeds City Council and the NHS set out to encourage people to talk about death with family and friends, to health professionals and within communities.
In 2017, as in previous years, organisers eschewed an above-the-line, advertising-centric approach, opting instead to use grassroots channels such as word-of-mouth, events and social media.
Twitter and Facebook activity carrying the hashtag #DyingMattersLDS was used to raise awareness of a planned launch event and to tell people what they could do to spread the word and join the discussion. A standalone campaign website, Dying Matters in Leeds (dyingmattersleeds.org), carried real-life stories and news of satellite events, remaining live and active throughout the year and into 2018.
'Everything you wanted to know about death but were afraid to ask'
Posters carrying the campaign's 'umbrella' message – 'Everything you wanted to know about death but were afraid to ask' – were placed in community locations such as libraries and GPs' waiting rooms, while community events took place and packs containing pamphlets and postcards were distributed widely. Articles were placed in third-sector publications such as Carers Leeds.
2017’s main PR launch took place at Leeds City Museum, opening with a set by a New Orleans-style jazz band, and featuring exhibits such as an eco-hearse that people could decorate, stalls and talks on topics including advanced care planning and wills and powers of attorney. Other events included 'death cafes' and a 'Day of the Dead' event in November.
Meanwhile between 17 December 2016 and 2 July 2017, Leeds City Museum ran an exhibition on death, funerals, grief and mourning, while two films were commissioned, one focusing on a hospice.
'Dying matters' made a modest debut in 2015 but has since grown exponentially in size and impact, getting tens of thousands of people talking about the previously unmentionable.
Last year’s efforts drew 31,270 visitors and 571,043 visits to the campaign site, which continues to be used, promoting talks and exhibitions.
A public consultation attracted 2,083 responses and demonstrated a shift in attitudes towards death, revealing that 60 per cent had made a will, 50 per cent had registered as an organ donor and 40 per cent had discussed their wishes for the end of their life.
Storify and Twitter analytics were used to monitor and measure responses. The #DyingMattersLDS hashtag trended in Leeds on the day of the launch and was mistakenly (but tellingly) thought by some to be the national campaign tag.
A sponsored Facebook campaign directed people to the Dying Matters week drop-in event 2017. The advert reached 25,884 people, had 41,533 impressions and 22 button clicks.
Today the campaign comprises a multi-agency stakeholder group with representatives from the statutory, academic, voluntary and business sectors. The group convenes every six weeks to ensure the campaign's momentum is sustained by a much larger, more diverse group spanning academia and business.
Recognition of 2017’s success was achieved beyond Leeds, with 2018’s national 'Dying Matters' event calling on two members of the Leeds team to present on best practice.
The success of 'Dying matters' will extend into 2018, with a £200 grant available for organisations wanting to get involved and plans to move the main event from the museum to the market to attract a more diverse audience, as well as a University of Leeds-hosted conference on dying in the 21st century.
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