In the NewsAfter eight weeks the Government’s exercise listening to the views of the public and professionals on the proposed reforms to the NHS finished at the end of May. Led by Professor Steve Field, former chairman of the Royal College of General Practitioners, the NHS Future Forum has toured the country holding nearly 200 engagement sessions in total. A report will now be submitted with the findings and the fate of the Health and Social Care Bill, due to enter the House of Lords, will be decided.

success with members organising a range of exciting activities across England. At road shows and market stalls, in shopping arcades, libraries and community centres across England the public had opportunities to talk about Dying Matters. Hospices opened their doors, churches held workshops, schools held open days and hospitals,

libraries and GP surgeries provided information to support conversations on end of life care. We sent out over 70,000 different materials to support members’ activities.

Next year’s Awareness Week will be from 14 – 20 May 2012 – put it in your diary and start planning now!

“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

News in briefDeath remains a taboo subject in Britain, according to new research commissioned by the Dying Matters Coalition. Although the majority of people think that talking about death is less of a taboo than it was 20 years ago, two-thirds agree that people in Britain are uncomfortable discussing dying and death. The research, which was released to coincide with Dying Matters Awareness Week, also found that few people had discussed their end of life wishes with their families. More than three-quarters of people (78%) thought that it is part of a health care professional’s job to discuss with them end of life care issues.

Full findings can be found at www.dyingmatters.org.uk/site/dying-survey

Issue 09 Summer 2011

Plans for reforming social care are also underway. The Law Commission published in May recommendations for the creation of a new national social care system which clearly sets out the support that people in England and Wales can expect from their local authority. The recommendations will be considered along with those of the independent Commission on the Funding of Care and Support being led by Andrew Dilnot and due to report in July.

Welcome to the summer issue of the Dying Matters Coalition newsletter. This bumper issue includes highlights of some of the many members’ activities during Dying Matters Awareness Week in May and new resources available to download. Awareness Week 2011 was a great

Age Concern Lewisham & SouthwarkAge Concern Lewisham & Southwark launched a new drop-in service at their Catford branch. The service, which is a partnership between Age Concern, Lewisham Pensioners Forum and Dying Matters, is open between 10am – 1pm every Thursday. Suzanne from Age Concern and Jane from Lewisham Pensioners Forum are running the project and can offer appointments and a limited number of home visits to those who are housebound. The theme is ‘Lets Talk About It’ and the aim is to open up discussion and engage with older people in the local community. The launch was well attended by local residents as well as representatives from the Mental Health Team (SLAM) dealing specifically with psychiatry of old age. A major theme raised at the launch were problems getting practical issues sorted out with adult children who did not want to acknowledge that parents were going to die over the next 20 years. There was also a strong emphasis on finding help to complete will-writing packs. The pilot project will run for six months and other groups have expressed interest in setting up parallel services.

This year’s Awareness Week received lots of really positive media coverage. Our survey into public attitudes towards dying was covered extensively, including by The Guardian, The Times and The Independent - and online by the Daily Mail and Daily Mirror. The British Medical Journal, Nursing Times and Community Care online also ran articles – including the Personal View column in the BMJ by Dying Matters Chair Professor Mayur Lakhani. Up and down the country Dying Matters was also extensively covered by regional newspaper, radio and TV –

with great coverage of the fantastic work being done by Dying Matters members.

We also launched Dying for a Laugh, a short film produced by PictureWise productions. The brainchild of Bolton hospital chaplain Kathleen LaCamera, it features top TV comedians Jenny Eclair, Dave Spikey, Ricky Tomlinson, Shappi Khorsandi and Ardal O’Hanlon and hospital consultant and comedian Kevin Jones. The film, which is available to view on the Dying Matters website, featured on BBC Radio 4’s Midweek Programme, the

Awareness Week 2011

Everyone’s talking about it!leading comedy website Chortle and on regional media in the North West. We also made extensive use of social media to promote Dying Matters Awareness Week and are delighted that so many Dying Matters members also promoted the week online.

We were absolutely delighted by the number and range of different awareness-raising activities that went on around the country. A massive thank you to everyone who got involved and helped spread the word. Read on for details of some of our members’ events.

NHS North Somerset

NHS North Somerset brought the Dying Matters message to film fans with a special presentation shown at the Curzon Community Cinema in Clevedon. The pre-feature slideshow encouraged viewers to consider the issues around death, dying and bereavement, with audiences able to pick up leaflets on their way out to learn more. NHS North Somerset plan to share the presentation with local GPs so that they can use it in their waiting areas, for patients to watch whilst waiting for an appointment. Residents of Anchor’s Manor Court care home in Plymouth took part in a paper lantern

ceremony. They wrote memories of their loved ones, and wishes for their own end of life, in the lanterns before releasing them into the air. Joan Collins, the care home manager, said the event had a positive, happy atmosphere and was enjoyed by all. She added: “In previous years we have planted a rose garden to remember our loved ones and this year we wanted to do something a little different”.

Manor Court, Plymouth

It was “Time for Tea, Time to Talk” at the County Hall in Nottingham on 16 May. Information boards and interactive activities, including the Dying Matters quiz, provided staff and the general public with a wide range of information about how to talk about death in a sensitive way, where to go to make a will, how to plan funerals and what to say when someone experiences bereavement.

The event was attended by around 70 people and the reaction was positive. “It was really important to have a safe and cosy atmosphere, and lots of people told us what a relief it was to discuss this difficult subject in an open minded way” said Halima Wilson, who organised the event and is planning more across the county in the coming months.

Nottingham

Dying matters awareness week16 - 22 May 2011

www.dyingmatters.org

♥ Plan your future careand support

♥ Talk to healthcare and bereavement specialists

♥ Get legal adviceand support

♥ Design how your lifecould be celebrated

Drop in or call 0115 977 2784

for more information or visit www.nottinghamshire.gov.uk

Information eventMonday 16 May 2011

11am until 3pmCounty Hall,

West Bridgford,Nottingham

NG2 7QP

The East London Mosque, Richard House Hospice and St Joseph’s Children’s Hospice came together for the first time on 19th May, in a joint conference to better understand people’s needs and preferences around dying.

Michael Kerin, Chief Executive of St. Joseph’s, said the conference was “a chance to make sure we get end of life care right for everyone here in East London. We have two goals: to ensure that we and other service providers understand the needs of the population and to ensure that everyone in the local community understands what is available to them. We want people to know what we do.”

East London

Trinity Hospice BlackpoolTrinity Hospice Blackpool held three days of events to encourage health and social care professionals to come together and discuss the importance of advance care planning within end of life care. On the Friday during awareness week the hospice held an event with the public and voluntary organisations, learning disability organisations, age concern, social work students, general practitioners and others.

The event was opened by Jimmy Armfield, former England footballer, manager and BBC Radio 5 presenter, who is President of the hospice (pictured on the front cover). At the event Eve Richardson, Chief Executive of NCPC and Dying Matters shared information on the Dying Matters Coalition and how Blackpool could develop its own community engagement project.

Earlier in the month Dying Matters held a GP training workshop at the hospice as part of a project to help increase GPs’ confidence in having conversations on end of life with patients, families and carers.

Staff in a residential home in Bishop’s Waltham, Hampshire, held a memorial service in which stones engraved with the names of residents who had died were placed around a stone monument. Relatives, residents and staff were invited to the service, and all tools and labour for the memorial were donated by local businesses and tradesmen. One relative said that he had not previously felt able to collect his father’s ashes from the undertaker, but following the service he felt he now had the strength to do so.

NHS East LancashireNHS East Lancashire’s Erin Bolton, End of Life Care Lead, and Catherine Hargreaves, Macmillan Clinical Nurse Specialist, performed a playlet on Sally Naden’s lunchtime BBC Radio Lancashire show, which reaches an audience of 85,000 people. Listeners have said that it has prompted them to make plans for their

Bishop’s Waltham

Bideford, DevonIn Bideford, Devon, a local cafe played host to a funeral planning party. Anne Bury, of Befriending Dying, who helped organise the event, said: “It let people realise that planning funerals can be fun – there was a lot of laughter and black humour. It’s important that more people understand the type of help that is available, and learn how to create a meaningful and enjoyable funeral.”You can download a copy of the funeral planning pack from www.dyingmatters.org

The second International Death Day Conference was held at the University of Winchester on Saturday 14 May. Keynote speakers were Tim Morris, head of the ICCM, and rev Prof Andrew Linzey, animal theologian and ethicist. Papers and workshops covered death and dying from different cultures and religions, representations of death in culture from the iron age, through the Middle Ages to today, animal deaths, death and health, and death in literature.

Death Day Conference

Brigg, North LincolnshireIn Brigg, North Lincolnshire, a number of organisations came together for an event in the Angel Courtyard. Local musicians played to welcome visitors, volunteers organised a raffle, and tea, coffee and cupcakes were provided by staff at the local Tesco supermarket. Exhibitors included all the local care organisations, hospitals, hospices, survivors groups, Celebrants, Funeral Directors and Respect Green Burial Parks. Attendance for the event was double that of the previous year, and visitors donated generously, meaning next year’s event should be an even bigger success. The event was covered by BBC Radio, as well as local newspapers and community blogs.

own death. One patient was prompted to reflect on the implications of their own diagnosis in relation to end of life care. Colleagues from the hospital who heard the show have commented on how effective this was, and some have followed this up with making their own funeral plans.

Volunteer Educator Pack

This comprehensive training resource pack prepares volunteers to share information about advance care planning in their local communities or workplaces. It includes a guide for trainers, handbooks, presentations and handouts, evaluation sheets and a resource list. The pack was developed by the Sue Ryder Care Centre (University of Nottingham) with support from the National End of Life Care Programme and the Dying Matters Coalition.

As a society we need to talk more about dying, death and bereavement. To be effective we need to work together across communities with everyone who has an interest in raising awareness of end of life issues. This pack is a practical resource with information and tips from different sectors on how best to work together to raise awareness in communities.

New Dying Matters Resources

Introductory notesfor facilitators

Community Pack

From our childhood onwards, we absorb images and ideas about dying. Some of them are wrong but, because we don’t talk about dying much, our misconceptions grow. These myths can get in the way of us planning properly for how we would like to live at the end of our lives. This leaflet includes five myths about dying that can be knocked on the head straight away.

Leaflet #10 Myth Busting

Leaflets on Homelessness

When homeless people die it is often perceived as untimely and undignified by those supporting them. Dying Matters has therefore teamed up with St Mungo’s palliative care project and produced two leaflets based on conversations with homeless people and hostel staff to support and open up conversations around end of life care. My Life, My Choices is aimed at homeless people and Talking About End of Life Choices with People who are Homeless aims to support professionals.

Learning Disabilities DVDLike everyone else, people with learning disabilities need to be able to acknowledge their loss and be able to mourn when someone close to them dies. They also need to be included in important decisions around end of life (especially their own). The film, We are Living Well but Dying Matters, shows people with learning disabilities sharing their stories and wishes to support others. It can be used by people on their own or with others to prompt conversations.

Don’t talk to me about dying...“I know that it’s painful. I know that hospices are places you go to die. And I know that talking about it won’t do anyone any good. That’s all I need to know.”

Ever considered that you might be wrong?

“Everyone has thoughts about dying. Although I’m not ready to

pop my clogs yet, I’m aware that

it will happen at some point.”To find out more about Dying Matters, visit: www.dyingmatters.org

#10Getting the facts right about death and dying

For more information... ...on what you can do to prepare http://www.dyingmatters.org/site/why-talk-about-it/planning-dying-well ...on planning your care towards end of life www.dyingmatters.org/site/need-support/legal-and-ethical ...on having conversations about dying www.dyingmatters.org/site/why-talk-about-it/talking-about-dying ...about hospices www.helpthehospices.org.uk/about-hospice-care/

or call freephone 08000 21 44 66

L10/05.11/V1

To find out how to get more help visit: www.dyingmatters.orgor call freephone 08000 21 44 66

The Dying Matters Coalition is led by the National Council for Palliative Care, the umbrella charity for palliative, end of life and hospice care in England, Wales & Northern Ireland.www.ncpc.org.uk

Registered Charity no.1005671

This is number ten in a series of leaflets focusing on dying, death and bereavement produced by Dying Matters, a broad -based national coalition which aims to support changing knowledge, attitudes and behaviours towards dying, death and bereavement and through this to make ‘living and dying well’ the norm.

End of life choicesTalking about end of life choices with people who are homeless

The Community Pack was launched at our Awareness Week event in London on 17th May, where delegates had the opportunity to hear examples of good practice from members involved in the Dying Matters Community Programme and engage directly with professionals from different sectors.

Find all these resources and more at www.dyingmatters.org

www. dyingmatters.org

As a society we need to talk more about

dying, death and bereavement which is

why the Dying Matters Coalition, led by the

National Council for Palliative Care, was set

up. Around 70 per cent of people would

prefer to die at home, but around 60 per

cent of us die in hospital. Many of us have

specific wishes about how we would like to

die, or what we would like to happen after

our death, but unless we discuss these with

family, friends and health professionals our

wishes will not be met.

It is in communities that the taboo of talking

about dying and death needs to be tackled.

To be effective we need to work together

with everyone who has an interest in raising

awareness on end of life issues. This pack

provides information and tips from some

of these groups on how best to engage

their sector on raising awareness in your

community.

Why should

we develop

compassionate

communities?

www. dyingmatters.comFor many people, encouraging and supporting others to

talk more openly can be a way of leaving a legacy and

making life better for others.

People with personal experience bring:

Inspiration – powerful, personal reasons why we need to

•be more open

Practical skills – Insights into how to open up

•conversations and an understanding of how it feels

How are they currently engaged with the public on

this issue?

Speaking on local and national mediaI

•Speaking at conferences

• Helping produce and shape materials to prompt and

•assist conversations

Speaking to local community groups and getting them

•involved

Planning Dying Matters week activities

• Using Dying Matters materials to support others in

•having conversations

What approaches and activities would interest

them and what would not (dos & don’ts)?

Opportunities to engage and involve people with

personal experience are limitless, providing you’re

flexible.

Some tips:

Don’t make assumptions: it’s easy to assume that people

•are ‘too ill’ to be involved or that it’s ‘too soon’ for

others. Just ask people what they’d like to be involved in,

and how, and make every effort to make this possible.

Support people when they’re involved. e.g.

•o Transport

o Expenses

o Making sure they are clearly briefed

o Checking in afterwards to make sure they’re ok

o Feeding back about the impact of involvement

o Making sure they’re clear that they can stop at any

point

o Out of courtesy, checking with people each time you

would like to use their story

o If a story will appear in the media, letting the people

involved know when it will be broadcast

Do everything you can to make their involvement

•interesting and enjoyable

Involving people

People who are experiencing a life-limiting

condition or nearing the end of life and

those who care for them, or have done so

in the past, have a real insight into why

and how to talk about issues around dying

and death. They can act as ‘Dying Matters

Champions’.

Following their son’s death, Dorothy and Tony have

campaigned for better end of life care

www. dyingmatters.org

Care homes are challenged with establishing a balance

between helping the person and their family to make the

most of the present, therefore maximising the person’s

potential and helping them to live as they would wish

to, whilst being mindful and informed concerning the

future.

Opportunities exist for care homes and the people

who live and work in them to: Foster a culture of open communication where talking

•about living and dying well is not a taboo subject.

Enable staff to explore the issues for themselves so that

•they feel more prepared and able to talk about living and

dying well with residents and their families

Engage with other professionals who are involved in the

•life of the resident. e.g. GPs, District Nurses, Community

Psychiatric Nurses and palliative care nurses.Raising AwarenessInternally within the Care Home Community

Making available the Dying Matters Coalition DVD ‘Party

•for Kath’ and other materials to facilitate discussions

with staff, residents and families Listening to residents’ experience and using it with their

•permission to form wider conversations and to inform

and shape ‘the way we do things around here’ within

the care home Understanding and using Life Histories from each

•resident Making links with My Home Life movement, a new

•initiative aimed at improving the quality of life of those

who are living, dying, visiting and working in care homes

for older people, www.myhomelifemovement.org

Care homesCare Homes are an integral part of the local

community - a place where relationships are

established between the people for whom

the care home is a home, the staff and the

carers and families.

The majority of people residing in care homes are aged

85 plus. Many enter the care home as people with

multiple complex needs, including cognitive impairment.

These people have significant life experience and will

have seen/experienced a variety of losses along their own

journey. The care home will be the place where they

choose to spend the remainder of their lives.

End of life care and the whole concept of living and

dying well is a key component of residing in a care

home.

Issue 09 Summer 2011

Contact Us Dying Matters Coalition The Fitzpatrick Building 188-194 York Way London N7 9AS Freephone 08000 21 44 66 Fax 020 7697 1530 Email 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. 1005671.

www.dyingmatters.org

Dying Matters has launched a new online hub to help you share your thoughts, feelings, knowledge and experience of dying, death and bereavement.

The key focus of the online community is the forum, where users can interact with each other and the Dying Matters team. Current board topics range from Inspirational Words and Music to a board dedicated to health and social care workers. The Dying Matters blog has also been re-launched and now has a ‘comment’ facility.

Dying Matters members and supporters can now connect with each other, seek advice, offer support, share best practice, debate topics or promote events.

Dying Matters’ focus on user interaction has been strengthened by the success of its Twitter and Facebook pages, which have grown steadily in the past few months.

If you want to share your views or feel passionately about any issues around dying, death and bereavement, log on to www.community.dyingmatters.org/community and have your say.

Join the Dying Matters Coalition at dyingmatters.org/join

Online Community Launched

Dying Matters reaches 15,000 membersWe were delighted that Dying Matters gained its 15,000th member this May. We’re pleased to welcome Co-operative Funeralcare whose 868 funeral homes have all joined the coalition.

From the beginning, just over two years ago, our membership has rocketed with solicitors, care homes, community groups and more all signing up to help spread the word and get people talking about it. We’re looking forward to reaching our next milestone, so if you’re not already a member, sign up today!

Ian’s story

We all have different ways of dealing with the death of a loved one, and when my daughter Melissa passed away at the age of 20, my reaction was to keep busy. Following Mel’s diagnosis with lymphoma I made it my mission to spread awareness of the disease and raise funds for the Lymphoma Association, a charity that gave Mel so much support. During Dying Matters Week I organised a Soap Stars and Football Stars charity match at Pride Park (pictured above). I also began to realise there were other aspects of Mel’s illness that could benefit others. Her end of life care was excellent and Mel’s attitude to life and death made me realise the

importance of talking. We never sat down with Mel and said “let’s talk about you dying”, you don’t have to force the issue, but when it is raised you have to be ready to take time to talk and listen.

I’m a passionate supporter of Dying Matters as I have firsthand experience of how important these conversations can be. One of our most memorable moments during Mel’s illness was when she woke from a deep sleep and proclaimed that she wanted her ashes scattered in Fernando Torres’ back garden. I explained he may one day leave Liverpool and although she found it hard to believe, she agreed it could happen. What followed was a bizarre conversation about her funeral, her death and her ashes. We didn’t force the issue, it just happened, but we were there to talk to her when she was ready and that is what I believe sums up Dying Matters, being able to talk when you need to.

As for Fernando Torres, a few months ago he moved to Chelsea and I couldn’t help but look to the heavens and say to Mel… we got that right!!