In the News. News in Brief. While I thought I was learning how to live, I have been learning how to die. Issue 04 March 2010.

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1 Issue 04 March 2010 Welcome to the fourth issue of the Dying Matters Coalition newsletter. This month sees the first Dying Matters Awareness Week from 15th 21st March, with events and activities taking place nationwide. Many Coalition members are using the week as an opportunity to reach out to the public and encourage people to talk about their wishes towards the end of their lives, including where they want to die and their funeral plans with friends, family and loved ones. In the News Discussions around death dominated the media during January and February. On 8th February 2010 Gordon Brown announced that every cancer patient in England will be offered free, one-to-one home care by specialist nurses if Labour wins the election. In a speech to the King s Fund think tank, the prime minister pledged this proposal on cancer treatment as part of a wider plan to give more patients the option of receiving chemotherapy, dialysis and palliative care without travelling to hospital. The announcement prompted wider debate throughout February around While I thought I was learning how to live, I have been learning how to die. Leonardo da Vinci end of life care and the need to provide care in the home. Social care was recently in the news following a call from a number of charities to cease political in-fighting and to concentrate on developing an all-inclusive strategy. Worryingly, current proposals do not explicitly address the needs of those approaching the end of life and their carers. Any emerging strategies should build on the End of Life Care Strategy. The cost of death was highlighted in a recent study of over 1,500 people and funeral directors carried out by Mintel on behalf of Sun Life Direct. The study suggested that the cost of funerals (coffins, flowers, wake) had risen to 6,000 and therefore was largely unaffordable to many people. News in Brief We re very excited about the new Dying Matters website which has now been launched. We hope it will prove to be an invaluable resource to both Coalition members and the public, and we hope you like it! As well as offering news and general information about the Dying Matters Coalition, the new site has a wealth of resources to help members raise awareness. Dying Matters leaflets and posters are available to download from the website, and there are banners for you to download which you can use as links from your own websites. Visit the new site today at:

2 Dying Matters Activities It s been a busy few months for the Dying Matters team as we finalise activities for Dying Matters awareness week (15th -21st March 2010) and build our resource packs for members. We re pleased to announce that these packs are now available and include materials to assist members when sharing the Dying Matters messages and raising awareness in their communities including: Information about the coalition, including background on the key issues, key messages, Questions & Answers, Press release templates, statements, and quotes for use with the media Ideas for profile-raising activities members can undertake Examples of promotional materials available to order, including posters, leaflets and post cards We are also very pleased to welcome many new organisations and individual members since December, including ECCA (English Community Care Association) which has increased our total membership to almost 7,000. Please do encourage the organisations you work with to join the coalition Events Dying Matters Awareness Week DYING TO TALK Nationwide 15th-21st March 2010 Launch Event and National Forum Conference Congress House, London Monday 15th March 2010 East of England Conference The Hilton, Stansted Wednesday 17th March 2010 South Central Conference The Kassam Stadium, Oxford Thursday 18th March 2010 Raising Awareness Dying Matters Awareness Week begins on March 15th, 2010, with a high level conference entitled Dying to Talk at Congress House in London. The event will be opened by Dying Matters Chair, Professor Mayur Lakhani GP, with numerous speakers including Minister for Health and Social Care, Phil Hope MP, Shadow Health Minister, Stephen O Brien MP and National Clinical Director for End of Life Care, Professor Sir Mike Richards a carer and some celebrities. Many other activities are taking place during awareness week, including an event at the Ashmolean Museum hosted by Age Concern Oxford on 16th March, a conference hosted by the King s Fund and Marie Curie Cancer Care in London, an East of England conference in Stansted on 17th March and a South Central event in Oxford on 18th March. There will also be a tea party at the House of Commons on 16th March with ministers, secondary school students and older people to highlight the importance of involving schools and hospices in the debate. During the week a big yellow bus organised by the Merseyside & Cheshire Cancer Network team will be travelling around city and town centres to raise public awareness. The network covers a population of 2.3 million and encompasses Primary Care and Hospital Trusts, Hospices and voluntary organisations. For more information, please visit These events will demonstrate the importance of talking about dying and death within our community and via a series of national and regional press opportunities, will help spread this message.

3 Your News Hospice exhibition gives dying a face Eight alabaster sculpted heads reflecting the evolving emotions of the sculptor, Jean Parker, after she was diagnosed with cancer, will be on display throughout Dying Matters week at an exhibition entitled Bald statements by St. Richard s Hospice, Worcester. The beautifully crafted heads represent a powerful and unique visual exploration of the grief process and relate not only to loss of health, but also to significant loss of any kind. The exhibition hopes to stimulate conversations and discussion around dying, death and bereavement in support of Dying Matters Awareness Week. St Richard s Hospice will also be hosting educational events to coincide with the exhibition in order to raise awareness of the Dying matters Coalition locally. Conversations for life In December 2009, NHS Cumbria launched a 12 month pilot project in collaboration with the Conversations for Life Programme to develop and deliver the first phase of a Cumbria-wide community based public and professional engagement campaign around end of life conversations and care. The Conversations for Life programme focuses on breaking the taboo of talking about death and dying, while people are still healthy, in order to consider options, access resources and make sure everyone has a say in their future care (advanced care planning). The pilot project included the development of a multi-stakeholder steering group and launch of a website, short film, and locally based workshops as a first phase to support an on-going, sustainable plan for community-wide awareness and engagement. In only three months since its launch, the website has had 3645 visitors with media impressions from BBC Radio Cumbria and locality papers are estimated to have reached more than 200,000. The first 11 workshops took place in six areas across Cumbria and attracted 93 members of the public. Although the initial goal was to reach the general public, participants included both public and professionals; family members, carers, patients, volunteers, health and social care professionals and members of local voluntary groups and associations. For more information, please see: www. cumbriaconversationsforlife.nhs.uk/index. html. Question Time debate NHS Nottinghamshire County arranged for a Question Time-style debate to take place on Thursday 11 February in order to gather the public s views, start a discussion around death and encourage patients and their families to discuss their choices and wishes. The debate was attended by members of the public who have been involved in end of life care projects and consultations, as well as a small number of VIPs from the local council and PCTs. It also attracted the attention of the media. Helen Scott, End of Life Care lead from NHS Nottinghamshire County said: The event was groundbreaking in the way it opened up discussion about one of life s biggest taboos. More than 50 people attended and the majority said they would now be more comfortable discussing death and dying with their family and friends. The fear of death is the most unjustified of all fears, for there s no risk of accident for someone who s dead. Albert Einstein Did you know? Research in the East of England shows 90% of all people who die have had at least 1 admission to hospital in the previous year (the average is 3). They spend on average 4 weeks in hospital before their death, accounting for 25% of all bed days across the region

4 Members Activities Findings from the second Dying Matters Members Survey We asked our members what they had been doing to raise public awareness around dying, death and bereavement. 66 responses were received from community, health care and social care organizations, as well as businesses, charities and academic institutions engaged in a range of activities to encourage discussions and planning on end of life care. A number of these are also being developed for Dying Matters Awareness Week. We asked respondents what their examples related to (e.g. public awareness and discussion), what they did, what they were aiming to achieve and how they evaluated their actions and any future plans. What we learnt The majority of responses came from health care organisations. Of those who responded, 85% have existing policies in place regarding dying, death and bereavement. Activities connected with varying numbers of people from just a few to over 200,000 and through printed articles they potentially reached millions. While many did not have specific targets, the primary age group targeted were over 65s. 51% had received no funding and 27% had only received partial funding. The majority of funding had come from the NHS. Activities included: Setting up coalitions or other groups to engage other professionals Presentations, workshops and training for professionals and the public Exhibitions Poster presentations Facilitating conversations with the public and health professionals Articles Information for staff through the payroll Introduction of end of life care champions Examples of awareness raising included: An innovative example of raising public awareness was organised across NHS organisations in the North West via the Clinical Pathway Group on End of Life Care, with a reach of 200,000 employees. An information leaflet was produced and distributed with peoples payslips, in both printed and electronic formats. The leaflets included five things to do in the month, and were developed in line with the awareness raising materials produced by Dying Matters. It was first piloted with clinical pathway group members and subsequently refined with input from Communications and Payroll. The International Observatory on End of Life care at Lancaster University piloted a peer education programme on end of life issues for older adults including designing a personal portfolio to hold individually tailored end of life resources and information. They undertook workshops for older members of the general public and their advocates and also aimed to identify future partnerships for ongoing end of life public awareness work. Sheffield Teaching Hospitals Foundation Trust introduced an end of life care pathway, and also runs study days on loss and bereavement within an education programme for healthcare workers. To introduce the pathway, meetings took place with directors, consultants and medical staff, followed by education sessions on all wards and units to discuss the pathway s purpose, the skills required, and to encourage staff to use it when appropriate. The approach also took account of feedback from families and carers. All wards and units now have a champion who leads on the use of the pathway and attends regular sessions on end of life care. The pathway is used across the Trust in all clinical areas. Activities with a focus on volunteers were held at Northumbria Healthcare Foundation Trust to raise awareness of their new relatives room and the expansion of volunteers within end of life care. Focus groups were undertaken with staff and bereaved relatives and a pilot volunteer training programme was set up. Post evaluation, the aim is to introduce the volunteer programme trust-wide, which will include coffee mornings and other fundraising activities incorporating education around end of life care. For further information, please carol. moore@nhct.nhs.uk.

5 Members Activities Comments from members Death is terrifying because it is so ordinary. It happens all the time. Susan Cheever Of all the things I do in my work, the Dying Matters campaign is always the one that generates most interest, most debate and most enthusiasm. I ve been impressed by the extra work people are doing in the North West, sometimes taking their own time to work on innovative schemes. This is something that is not just for a day, a week or a month - it will need years of work. Local people are interested once they get over the initial fear about talking about death The workshop process and cluster groupings have been a safe place to talk about death, dying and bereavement in practice. We are delighted that Dying Matters will now remain on the national agenda. We recognise the importance of raising awareness and will continue to do all we can at a local level. Did you know? Of the 500,000 deaths per year, 58% occur in NHS hospitals with around 18% occurring at home, 17% in care homes, 4% in hospices and 3% elsewhere. End of Life Care Strategy (2008) Get Involved Tell us about your own events and activities at our new website: Dying Matters Awareness Week is designed to introduce the Coalition s messages to the public, explain why they are so important and thereby stimulate conversations around dying and death. But the week is just the beginning. Across the country, members of Dying Matters Coalition will continue to promote conversation about dying, death and bereavement in interesting and supportive ways and we want to encourage everyone to get involved. Staging an event will is also a good opportunity for you to highlight the important work your organisation is doing in your local community. For members who have just joined or are planning events for the future and need some ideas, we ve developed some great suggestions of possible activities, events, workshops, seminars or performances you could organise in your community to help get the conversation started. These ideas can be found on our website and can be used in conjunction with the resource pack information and Dying Matters leaflets and postcards. Whatever the budget or amount of time your organisation has to spare, we hope you ll help to encourage discussions in your local community. You can advertise your events(s) on the Dying Matters website by completing the events form available at get-involved.

6 Issue 04 March 2010 Members Awareness Raising Activities NHS Wirrall End of Life & Community Specialist Palliative Care Team are hosting a Dying Matters Awareness Raising day at Clatterbridge Centre for Oncology 17th March A day conference at Stourport Civic Hall discussing A new vision for End of Life Care hosted by Kemp Hospice 18th March Compassionate Communities are organising a Conference at Stourport Civic Hall exploring a new approach to end of life care involving the community 18th March Some of our members activities for Dying Matters Week are listed on the left. Elsewhere, key health organisations throughout Salford including NHS Salford, Salford Community Health, Salford Royal NHS foundation Trust, Salford Cancer Patient and Carer Partnership Group and St Ann s Hospice, have joined forces to promote Salford Dying Matters Week through a series of events in the local area. Local health professionals, social care workers and key end of life care providers will be attending each event to chat to the public about the various end of life care options available to them and offer support and guidance. North Lincolnshire Seniors Forum have planned an event for the 25th March 2010 where the public will be invited to talk with representatives from various organisations such as Palliative Care Providers, a local hospice, Registrar s Office, Coroner s Office, Funeral Directors, Legal and Advocacy Services, as well as the volunteer peer educators on End of Life Care. A short film will also be broadcast on a continuous loop in the foyer of the venue showing people in discussion about dying and bereavement. Join Us Dying Matters is a broad based and inclusive national coalition which aims to engage thousands of organisations across a range of sectors to promote public awareness of death, dying and bereavement in England. Membership is free. You will have access to up-to-date materials and advice and attend events which will help you to generate, lead and support collective action with others in your community. You will receive regular updates and guidance, Contact Us showcasing good practice to help you reach out to those around you. Our brand new interactive website will provide further support and information. As a member of the coalition you will be part of something big, a national movement, helping us to make a positive impact and bring about a much-needed social change for good. Why talk? Dying Matters Coalition The Fitzpatrick Building York Way London N7 9AS Freephone Fax info@dyingmatters.org 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 As a society we do not talk about death and dying, only 29% of us have discussed our wishes around dying with our family, friends or carers. This lack of awareness has impacted on the quality and range of support and care services available. Talking about dying will help to: Reduce feelings of isolation and fear of dying Minimise guilt and regret among the bereaved Achieve wider participation in end of life care Enables more people s needs and choices to be met Prioritise improved care and make good care everyone s business Join the Dying Matters Coalition at dyingmatters.org/join