I s s u e 21 A u g u s t 2014

It’s the bumper summer edition of enormous creativity to help the nation Pictured above is our Chief Executive the Dying Matters newsletter, talk more openly about end of life Claire Henry with staff at Thorpe Hall reporting on Awareness Week 2014. matters. Inside this issue we’ll be telling Hospice, sharing her wishes on their Around the country, events took place you about as many of these great events “Before I Die” chalk wall. (From left to mark our fifth Awareness Week in as we can possibly fit in, along with the to right: Allison Mann, Susan May, with the theme “You only die rest of the Awareness Week news, plus Shackleton, Claire Henry, Katy once”. Our members displayed what to look out for later in the year. Harrison)

Getting the nation talking: Awareness Week Dying Matters in the media 2014: facts and figures While Dying Matters works all year the wishes of their loved ones. The round to raise awareness of dying, research received coverage in the • 530 events nationwide death and bereavement issues, Times, which included an editorial • 300,000 leaflets and other Awareness Week is our biggest in support of talking openly about chance to make a mark on the public dying, and our Chair Professor Mayur resources distributed consciousness. Each year, media Lakhani wrote an article for the coverage for the week has grown, and Guardian which was one of the top • 570,000 people reached 2014 was certainly no exception. articles on their HealthCare Network • 650 mentions across section. There were also double- Right from the start of the week on page features in the Sunday Express national and local media Monday 12th May, Dying Matters hit and Metro about Dying Matters, the airwaves with appearances across • 17,000 website visitors plus coverage in the Daily Mail, the the BBC including BBC One’s Breakfast Independent, Time Out magazine, and programme, and dozens of local radio • 8,700 #yodo tweets online in the Huffington Post. stations around the country. ITV’s This Morning also ran a phone-in feature Dying Matters coalition members • 8,200 Youtube views on the Wednesday about Dying around the country did a fantastic job Matters, advising callers on the best engaging with their local media, and way to plan ahead for the end of life. events from all parts of the country Next year’s were covered in the regional press. As part of the week’s activity we Awareness Week: A big thank you to everyone who launched new survey findings, worked so hard to get vital issues save the dates! showing that millions of people in around the end of life in the public the UK are failing to make adequate eye where they need to be. plans for their death and don’t know 18th-24th May 2015 Awareness Week 2014 Dying Matters annual lecture: Kate’s Story Kicking off this year’s Awareness Week was by reading about Kate, and there was a the second Dying Matters annual lecture. panel discussion with esteemed medical Held at the Royal College of Physicians consultants Fiona Hicks, Dr Philip Pearson (RCP) in , the event celebrated the and Dr Frank Phelan. work of Dr Kate Granger. Kate, a Specialist Kate and her husband Chris took to the Registrar in Geriatric Medicine, has stage to introduce a short film, produced incurable cancer. Since her diagnosis, she by Flix Films, in which they share their has written two books, and also blogs and experiences of the last three years. Kate tweets extensively about her experiences told the audience she and Chris had spent as a patient. In 2013 she launched “hello “two days laying ourselves totally open my name is”, a campaign for more emotionally to make this”. Since its launch, compassionate care that encourages staff the film has seen an incredible response to introduce themselves to patients and online, with over 10,000 views on Youtube make a human connection. at the time of writing. The lecture was chaired by Alison Holt, Our sincere thanks to everyone who BBC Social Affairs Correspondent, and helped make the event such a success, speakers included our Chief Executive including the RCP for their funding and Claire Henry and RCP Treasurer Linda support, Flix Films, and especially Kate Luxon. Poet and comedian Kate Fox and Chris. read a warm and witty poem inspired Making a Bucket Project full of activities In Liverpool, community groups, charities, The tea party (pictured below) was a huge Difference in businesses and individuals worked success with staff, patients, volunteers together under the banner of The Bucket and visitors, with people who don’t often Project to co-ordinate a jam-packed come in to contact on a daily basis having Birmingham programme of events throughout the a chance to get to know each other and whole of Awareness Week. the roles each of them play in the hospice. A key event during the week was “Making a Difference: Delivering Two launch events on the Monday, at the Read more and see some great pictures at compassionate end of life, dementia & Central Library and Walker Art Gallery, thebucketprojectliverpool.blogspot.co.uk bereavement care”, a conference which featured an interactive Remembrance Tree continued Dying Matters’ key partnership and four foot high letters spelling “life” work with the Heart of NHS and “death” which visitors, including Foundation Trust in Birmingham. school groups, wrote on with their own thoughts about the subject. The day was introduced by the Trust’s Chair, Lord Philip Hunt of King’s Heath, Other creative activities during the week and featured a variety of speakers included a “Dead Write” poetry including Debbie Kerslake, Chief workshop, and on the Friday a vintage tea Executive of CRUSE Bereavement Care. party at the local Marie Curie Hospice. Subjects covered and discussed on the day included death certification reforms, dementia, and child bereavement. “One of the best things about this event Future Matters was that it was almost entirely volunteer Dying Matters materials were of course led,” said Debbie Young, the programme available on the day, with Beth Lloyd- poetry evening Manager. Pictured below is Future Matters Williams and Kate McNaboe (below) on volunteer Paul Greaney during his reading. hand to provide information and Future Matters, a programme to train and literature to attendees. The Future Matters project is led by Age support volunteers in end of life planning, UK Islington and Gentle Dusk, and held several events during the week. As funded by Islington CCG. well as an information stall at the Whittington Hospital, there was also a fascinating poetry evening at Waterstones Islington Green. At the “Last Words: Death and Dying in Poetry” event, wordsmiths and brave audience members read poems covering topics including “How Close Death is to us in Life” and “Life After Death.” Events in brief DeadSocial’s second pop-up Trust Inheritance offered their week: working together services during Awareness Week by As a curtain-raiser for Awareness Week, giving free presentations and talks the innovative online legacy tool on end of life planning at Dying Matters member events. DeadSocial once again held a week of events in a “pop-up” space in Camden. South East Coast Ambulance Service NHS Foundation Trust ran their Among the activities taking place was the first ever end of life conference for world’s first “live infographic”, where staff. Workshops covered subjects facts and figures around dying, death and including “myth busting”, and bereavement were colourfully displayed Dying Matters champion Mandy and updated live as people gave their Paine gave a patient’s perspective. thoughts via a survey. “We hope it will become an annual fixture on the calendar,” said The week of events was organised in organiser Nigel Brown. partnership with a large number of local organisations, including Leverton & Sons A crew from South Korean funeral directors, who held a Q&A Educational Broadcasting System session, local NHS groups, Camden Carers flew to the UK to cover the Centre, the Good Funeral Guide and Awareness Week as part of a more. Dying-themed artwork from the documentary on “dying well”. The UK, the USA and Finland was exhibited team visited Dying Matters HQ and events around the country. around the pop-up space, and the week concluded with a party, where attendees enjoyed live music and refreshments provided by local suppliers. Death in Bath James Norris, CEO and founder of The University of Bath’s Centre for Death DeadSocial, has shared his top tips for and Society (CDAS), a longtime supporter organising your own event on our blog of Dying Matters, saw students and faculty working together to spread the (www.dyingmatters.org/blog) and will be word. At an interactive stand, visitors working with Dying Matters to produce wrote down their wishes and chose their practical advice on how to plan ahead for favourite funeral song - and there was a your digital legacy - keep an eye on this cardboard coffin to leave a message on Royal visitor at newsletter for details. (and even take a selfie with, as pictured below). Peace Hospice Independent funeral celebrant Su Chard In Watford, HRH Princess Michael of Kent Out and about led a workshop, two panel discussions on visited the Peace Hospice during end of life issues took place, and the Bread, Print and Roses collective led a Awareness Week, contributing to their in Hull guided tour around Bath to places related interactive Bucket List display with her to death and dying. wish that she will have another grandchild before she dies. The university’s student radio station also got involved, co-producing a documentary “Her visit gave such a boost to everyone programme with CDAS entitled “Grave on the day”, said Peace Hospice CEO Expectations” - listen online at Sue Plummer. www.tiny.cc/grave-exp

Hull City Council teamed up with Dove House Hospice to celebrate Dying Matters week. The team, pictured above in fabulous matching t-shirts, travelled to Leeds to attend the Death Café hosted by the Leeds Bereavement Forum. They also had practical information to offer members of the public on a stand at the famous Hull Truck theatre. Busy day in Brigg In North Lincolnshire, Respect Woodland Green Burial Parks hosted their annual “funeral cake” competition (pictured, right). Funeral Cakes are a Yorkshire Dales tradition, with links back to the Arval bread of the Vikings. Local charities and organisations held Butterflies at stalls in the busy hall, with the centerpiece Events in brief a wide range of creative cakes on display. Stocks Hall In Buckinghamshire, B Legal funeralcake.blogspot.co.uk Stocks Hall Nursing & Care Group Solicitors held their first Dying promoted the Awareness Week at their Matters event, providing the Skelmersdale Care Home and across West local community with free advice Skipton show Lancashire. At an event on the Tuesday, about Wills and probates, financial home-grown butterflies were released planning, long term care planning support (pictured below) as a unique way to and planning a funeral. Skipton Building Society had Dying honour and remember loved ones. Gloucestershire Care Services Matters posters on display and leaflets spread their efforts wide, with available for customers to take away in information stands in seven branches nationwide. The company also community hospitals, and held shared content on their social media drop in information sessions for channels and sent out an email about the all staff. Employee Pat Anderson Awareness Week to over 70,000 also ran a Dying Matters stand at customers. the local fesitval in Nailsworth, and gave a talk for a group of older people on death, dying and the importance of talking to loved ones.

The Will Writing Company offered Trinity host their customers £50 towards a Will or other legal services throughout funeral debate the week, and encouraged building societies who they work An evening of debate at Trinity Hospice, with to take part. They also Clapham, aimed to discover the truth attended events and spread the behind death and funerals with honest word via social media and the and open conversation. local press. A Dead Good Hospice staff were joined on the panel by Poppy Mardall of Poppy’s Funeral Widowed & Young (WAY), a charity Day Out Directors, debating with members of the that offers support to men and public and exploring some of the more women under 50 whose partners St Andrews Church in Southampton was prevalent myths about dying. have died, held their annual Big host to a vibrant “Dead Good Day Out” Picnic event on Sunday 18th May, event (above) on the Saturday before at sites around the country. The Big Awareness Week. Picnic helps WAY members spread the word about support available Organised by Deb Wilkes of Oakhaven for younger bereaved people. Hospice and Chris Townsend who works at Minstead Study Centre, the event Art Macabre’s Death Drawing featured many creative activities including salons are a creative way of Mexican sugar skull making, decorating a looking at death rites, beliefs and coffin with the Natural Death Centre, rituals in folk culture, in Britain music from Southampton Ukulele Jam, and elsewhere. Two were held in and the exhibition of Antonia Rolls’ series London during Awareness Week, of paintings A Graceful Death. What you said and there was also a screening Local businesses including Earth to of the film Restless to provoke Heaven coffins and Harmony Funeral “A most positive and life conversation and thoughts. Service supported the day with market affirming event with a hint of Professor Mayur Lakhani was stalls, and speakers gave short talks denial but also much laughter.” among the speakers at Ireland’s throughout the day. Attendee Mike Elaine Bayliss, first ever Primary Palliative Care Grenville captured a great video of the seminar on 15th May in Dublin. event: www.tiny.cc/deadgoodday NHS Improving Quality New s #YODO: connecting people worldwide Since Dying Matters launched in 2009, We are frequently surprised and delighted we’ve seen more and more people by the level of informed and engaging engaging with our work online and using conversation on our Facebook and Twitter the power of social media to talk, plan feeds. Twitter especially has proven a and share learning with others. great way to connect with people and we are proud to say that @DyingMatters now Our website at www.dyingmatters.org is has over 18,000 followers. growing fast, with more information, resources and features being added all the For this year’s Awareness Week we gave time. There’s Find Me Help, our directory our theme of “You only die once” a twist of services for people in the last years of with the hashtag #YODO. This theme life, which now lists around 1,500 really took off, with over 8,700 mentions voluntary and statutory organisations during the week. People used the hashtag offering over 3,000 different services, and to talk about their own wishes for the end recently we’ve had some fascinating and of life, share the latest news and resources varied posts on our blog, ranging from the covering dying, death and bereavement, practical to the personal. and encourage people to start important conversations with their loved ones. During Awareness Week, the site had over 50,000 page hits from 17,000 unique On the Tuesday evening, Sheffield Cancer visitors, the highest we’ve ever seen. Mafia held a live #MyFuneral tweet chat, Some pages proved particularly popular: asking people to say what they’d want for as well as our Awareness Week hub and their final send-off. Answers were so there are more ways than ever to get in the new film Kate’s Story, many visitors illustrated live by artist Sarah Smizz and touch with us. read pages on being with someone when there were plenty of unusual requests www.facebook.com/dyingmatters they die, and what signs indicate that (pictured right is a colourful example!). www.twitter.com/dyingmatters death is near. A wealth of advice on these We’ve recently launched Dying Matters on www.pinterest.com/dyingmatters difficult situations and other sensitive the networks Pinterest and LinkedIn too, www.linkedin.com/company/dying- issues is available on the site. matters-coalition

Top tweets Mae Marwolaeth o Bwys: Dying @HuffingtonPost Matters launches in Wales Move over #YOLO, now The work of the Dying Matters Coalition indicates that people in Wales are the there is #YODO - You Only has been extended to Wales as part of a least likely in Britain to have written down Die Once three-year plan for improving end of life preferences for their future care should care in the country, and Awareness Week there come a time when they are unable @StevenAE_21 saw us officially launch this new to make decisions for themselves, Went through tonnes of programme of work at an event in Cardiff showing a vital need for more work in red tape one night to on Tuesday 13th May. Wales dedicated to talking and planning for the end of life. arrange for dying man to On the day, Dying Matters launched have glass of wine with his Welsh language versions of our “You Only We are very excited to bring Dying Die Once” leaflets and posters. Welsh Matters to Wales, and while the project is wife- little things matter Minister for Health and Social Services still in its early stages, look out for more @kesleeman Mark Drakeford (below) said: “It’s so events and information in future issues. If significant to have an organisation here you’d like to get involved, please let us Fiona Hicks: treat what’s dedicated to changing public attitudes, know by email on [email protected] treatable. Reverse what’s behaviours and understanding.” Research or call Freephone 0800 021 44 66. reversible. But don’t be commissioned for Awareness Week afraid to recognise dying. @mariecurieuk What you said Social media has a role in “All the stories have been giving terminally ill people fab and I’ve shared lots of them with work colleagues a voice & helping doctors and friends.” learn to talk to patients about dying Dawn Orr, Tameside Hospital Foundation Trust I s s u e 21 A u g u s t 2014

Day of the Dead: a festival of remembrance As ever, we’ll be hosting our annual Day organisation in Scotland, Good Life, Good Our Day of the Dead celebration is open of the Dead celebration this autumn on Death, Good Grief. Their people’s festival to all Dying Matters members, and Monday 3 November, at the Institute of of storytelling and remembrance, called booking will be open very soon, so check Latin American Studies, University of To Absent Friends, takes place for the first the website or call 0800 021 44 66 if London. time this year. See www.toabsentfriends. you’d like to be notified when places are org.uk for more information. available. It’s a festival of remembrance inspired by the Mexican Dia de Muertos, and this year Our popular Day of the Dead altar played We look forward to seeing you there! we’ll be taking a close look at how a big part during Awareness Week, as traditions of mourning, remembrance and Dying Matters champions Tony and celebration of those who have died differ Dorothy Bonser toured the stall around a between cultures around the world. number of events in the North West (right), as a way to grab people’s interest The full line-up of speakers is still to be and start those vital conversations. confirmed, but one project we’re drawing inspiration from comes via our partner While There’s New films Still Time now available Our second creative writing competition, Two new additions to our popular range Subscribe to While There’s Still Time: Writing about of short films are now available on DVD putting things right, has now closed. from the Dying Matters shop. NCPC today We’ve received some fantastic entries and In “Playing Dead”, produced by The National Council for Palliative Care we’re very excited about picking the Picturewise Productions, three actors who (NCPC), which leads Dying Matters, can winners. Full results will be announced in have famously “died” in their roles use help you deliver better care. the autumn. their experiences to raise awareness of An annual subscription to NCPC can the need to talk about death and dying. benefit all those supporting improved Social & health Graham Seed (below), who played Nigel palliative and end of life care, including Pargetter in , spoke to Radio 5 hospices, charities, NHS trusts and care care conference Live during Awareness Week and joined teams, GPs, care homes local authorities, us for our second annual lecture. Brian and many more. Subscribing offers a host Making it work for everyone: Blessed and ’s Julie of benefits, including an exclusive Coordinating Social & Health Care at Hesmondhalgh also star. monthly policy round-up, our quarterly the End of Life Our film about Kate Granger, shown at the magazine Inside Palliative Care, copies of 11th September 2014, London annual lecture celebrating her work, is also all NCPC’s new publications and Social care and health care need to be available on DVD now. guidance, and access to our online co-ordinated to give people at the end of http://shop.dyingmatters.org archive. life the best possible death; yet we know Subscribers also receive a 50% discount that too often this isn’t the case. on delegate places at NCPC’s national This conference will enable you to hear conferences, and on further copies of from services who are working together publications, so a subscription can offer well locally to provide good care and significant savings while providing support to people at the end of life, and practical resources and professional consider the challenges of how things development for your staff. ought to work. Find out more at Visit www.ncpc.org.uk/events-training to www.ncpc.org.uk/subscribe find out more and book your place. Join the Dying Matters Coalition at www.dyingmatters.org

Dying Matters Coalition The Fitzpatrick Building 188-194 York Way London N7 9AS Contact Us Freephone 0800 021 44 66 Fax 020 7697 1530 Email [email protected] Facebook www.facebook.com/dyingmatters Twitter www.twitter.com/dyingmatters

The Dying Matters Coalition is raising public awareness of dying, death and bereavement in England. It is led by the National Council for Palliative Care,the umbrella charity promoting palliative care for all those who need it. The National Council for Palliative Care Registered Charity no. 1005671.