New health care strategists ignore the needs of people at the end of life

The National Council for Palliative Care, the lead charity for Dying Matters, has released research today which reveals just 28 of the 83 newly created Health and Wellbeing Boards with public strategies have considered the needs of dying pe...See More

Health and Wellbeing Boards "ignoring needs of dying" | Dying Matters

www.dyingmatters.org

The report, 'What about end of life care: Mapping England’s Health and Wellbeing Boards’ vision for dying people', finds that 

The figures in the telegraph come out a bit different but it is the same story

http://www.telegraph.co.uk/health/healthnews/9694529/Needs-of-dying-overlooked-by-health-reforms-claims-charity.html

Minstead Day of the dead

 It has been a most extraordinary time, a Samhein like no other.

It is sometimes said that the festival for the end of the Celtic year ran for 12 or thirteen days and included much feasting after slaughtering animals which could not be kept through the winter. 

With KTB http://www.kickingthebucket.co.uk/ starting in mid October and DOTD,  http://www3.hants.gov.uk/msc/msc.html being on Nov 3 the whole thing has been going on for over three weeks. 

I only managed to get to a handful of KTB events, and I have still not written them all up.

As I write this afternoon my old and very dear friend Mary Duhig has been cremated near her home in
Cornwall. She died last Monday. Fare well, Mary. You helped me rebuild my life and reach a peak or two.



Denise, her friend and carer will have been collecting the ashes.Mary did not want a funeral. I was able to add Mary's name to the book of thoughts and feelings on the altar at the Minstead study centre, where I travelled last Saturday for the Day of the Dead celebrations.

What an event it was; like rolling all the events in the kicking the bucket festival into a single day.

It was also the first chance that I have had to contribute a workshop myself.
I led an hour's session on my book about grief, https://sites.google.com/site/alifeworthcelebrating/ and the writing of poetry as a creative response to the grieving process. Eight people came to the session, which was quite pleasing, but only three wanted to stay to go on a guided meditation and to write something at the end of it. Then we shared the words, symbols and images that had come to us in the course of the experience.

I gave people my card and suggested they might like to send me their writings on line at some point after the day, if they wished to share them.

 This was a curious installation that greeted me as I walked up the the round house to hear a brilliant story about an old man and his seal woman family in Scotland. I was asked what made me most alive. I thought of my loved ones, living and dead. It was written on one of these red ribbons and pinned on the black dress of death. Then I went on to the round house.

Taprisha ,http://taprisha.blogspot.co.uk/p/taprishas-storytelling.htmla , on the right read the stories in the round house. I loved the rhyming structure of the story-most unusual and so well read. 

http://taprisha.blogspot.co.uk/p/taprishas-storytelling.html

Coming away from the round house I passed again the figure of death with her red mistress. http://janijellybean.blogspot.co.uk/p/my-story.html

Here someone meditates on what makes her most alive.

                                                                                                     Her daughter, maybe?

 http://www.positivelymington.com/index.html  Jude and her mother of the Lymington group.

                                                                                         Who is this with the beautiful death mask? I resisted the temptation to have my own face painted.

Everyone enjoyed the puppet show under the green man.  

                                                        

                                                                                   The altar where I placed the remembrance for Mary and my Gilli

    

Towards the end of the day I made a fire fairy, something to take to the bonfire for a ceremonial goodbye to the dead.

My fire fairy heads for the fire.


I decided to leave a little early as it was getting dark and I had forgotten to bring a torch to guide me on the country path back to the car. My apologies to any and all to whom I did not say good bye.

There are so many things left unsaid, like meeting Rosie from the Natural Death Centre for the first time, like talking to Deb and Chris about it all at various intervals as I moved about, like cups of herb tea with ginger cake. and parsnip soup with a roll. I even managed to hear humanists talk about their funeral services. I talked briefly to Atcha about her death and dying workshops, which I am planning to start leading myself next year;
my own version that is!

I am so glad I went, even if I got lost on the motorway going south and wrong again going home. I have three volumes of NDC literature to add to my dead good funeral guide from KTB. I shall be busy reading,studying, thinking and planning.

I have started very informally as a guide/coach to Denise through the process of death dying and bereavement. The timing is good as it was when I first started work with Mary Duhig many years ago.

It's your funeral. So why not make some plans before it is too late

28th Oct - 2.45-4.45pm | Design your own Dead Good Funeral – workshop. 

Friends Meeting House, 43 St. Giles, OX1 3LW | Map No 8

After attending some truly awful funerals John and Sue, founders of Welfare State International, decided to try and improve things. Using their skills as artist, writers and musicians,They started Dead Good Guides which creates new traditions of secular rites of passage and offers training to independent celebrants. www.deadgoodguides.com

This workshop will discuss case studies, dispel common myths, demonstrate the nuts and bolts of planning a funeral, inspire you and give you confidence in developing your own funeral wishes. You will come up with a framework for a personal ceremony you can take home and discuss with your family and friends.

Having looked them up on the web and been immensely impressed by their history of creating arts in the community and bringing funerals to life for many people, I had high expectations of this workshop and was not disappointed.

I wrote down the suggested balloons for the different aspects of making my funeral plan and added the numerous dimensions, but I hardly made one clear decision.

With Holly's mother having had a friend as executor and six months to plan hers, she had it all down to the fine detail,

.She got her white Rolls Royce and her coffin in blue velvet with silver stars. She had the catholic funeral service followed by a trip to the crematorium for close family and friends.

But I think I need to talk it all over with Gabrielle and the children before I do anything. After all, they might ignore everything I have in mind unless I make some lawyer the executor and get him to disinherit them if they misbehave. I am not going to do that.

Cousin Christine managed to give all her wealth to Mind despite the fact they never did anything to help her. There was even a clause in the will which allowed them not to spend it as she would have wished.

Given that I am very likely to die within twenty years I want to make plans now, so that my family are not left struggling with trauma and shock while trying to guess my desires, after my little red sports car crashes off the cliffs. I am always aware of how suddenly Gill dropped dead next to me.

Gill left no will. We were unsure about what she even wanted for her boys.

I don't want that for me.

There is another reason to do it now. 

If I want to be able to help others through death and dying I had better at least have my own house in order.

There is an even better reason too, which leads right back into this workshop. 

Death needs to be reclaimed for life and the living. It has been anaesthetized and commercialized to the point where everything is determined by money and Victorian tradition. 

How many really dead funerals have we all been to?

Queen Victoria died 109 years ago. But the way we do funerals has become ossified in rituals that have not changed since the nineteenth century.

Yet we have Jung's archetypes and Campbell's Creative Mythology to draw from now in thinking about living our dying. Though many have lost faith in a transcendent God, they find solace in an immanent God or Goddess in the world of nature around us.

We have the vast resources of the internet to draw on in dreaming and planning.

What is more, in these cash strapped times we can do things so very much more cheaply if we take matters into our own hands. Who needs a hearse?

John and Sue took us through lots of examples of the work they have been involved with over the years in Cumbria.

When they first put out feelers to the world to explore how to make funerals more creative people flooded to them from all over the world.

One of the main themes was the way so many people have moved away from the old religions without losing a sense of spirituality.

The funerals people create these days tend to be filled with natural symbols. God or Gods and Goddesses are discovered and worshiped by people in images taken from the world of nature around us.

This workshop followed on directly from the Pitt Rivers Fish burial. Someone even asked about advertizing on coffins. The Pitt Rivers had chosen a coffin covered in advertizing ads for their shop keeper funeral. Why they had chosen this empty commercial idea is explicable in terms of their exhibition on trade and trading places, but it was so lacking in the wonderful creative art work that this same coffin makers in Ghana was producing and still produces.

Here in this workshop we saw people collectively gathering to make felt shrouds or add pictures on to a white shroud. So much art work can be made digitally today.

We explored legal issues.

There are few legal requirements.

It is possible for family and friends to do everything themselves.

It was touching to hear of one group finding seven shovels for mourners to bury the dead person. It took just eleven minutes to fill in the soil over the coffin.

All of this is so much easier to do if you know how long you have to live. Many people at least know how many months they still have if they are terminally ill.

I am just not sure I shall have the energy left then though. I may become depressed.

I plan to offer my help to people who are dying to help them through the process as coach. 

I bought their dead good guide to help set the ball rolling.

The theme of the funeral symbolizing what the life has been about seems a profound idea to me.

But what symbols to choose for me? Is it too early to say what my life has been about, when there might be so much left to come?

Philosophy and Death, another kick at the bucket

25th Oct - 7.00 – 8.30pm | Life and Death – discussion. 

Blackwell's Bookshop, 50 Broad Street, OX1 3BQ | Map No 7

Three thinkers and writers discussing the question, 'What is a good life and how should we live it?' and how does the knowledge of mortality affect the answers to this question? Nigel Warburton,philosopher and podcaster ( joined the Open University in 1994 and is best known for his introductory philosophy books - www.nigelwarburton.typepad.com), Roman Krznaric, a cultural thinker and founding member of The School of Life - www.romankrzaric.com, and Neel Burton, a psychiatrist, philosopher, writer, wine-lover, and perpetual student -follow him on twitter and facebook. An evening of thoughtful conversation to challenge and engage us all.

 always remember the debates between Profs Mackay and Flew on philosophy at Keel University.

They were a class act, their cuts and thrusts honed from years of practice and a genuine wish to educate rather than bore the student audience.

You could not hope for that from a scratch event. But the  standard I have had set is high and this did not come near a good level of debate.

However, Roman Krznaric is a real discovery. He is carrying on and may be improving on what we were attempting at the Oxford Centre for Human Relations twenty years ago. I warmly recommend you to explore his website's connection with Zeldin's Oxford Muse  http://www.oxfordmuse.com/?q=what-is-the-muse  

I am intrigued by his idea that newspapers should have a death style section to go with their Lifestyle section.

I also like his idea that we should study the late medieval period and the early renaissance period to learn how to live creatively with death. I told him I would explore that with poetry at the Ashmolean. 

But Roman has already come up with the idea of a completely different kind of museum, a museum of empathy

Empathy Museum

My ambition is to establish the world’s first Empathy Museum:  a creative space where you can explore how to view life from the perspective of other people. It would be the opposite of traditional museums, with objects hidden inside glass cases. Rather it would revive the original meaning of the word ‘muse’ – the Muses of mythology injected a divine spark into everyday life – and be a place of experiential and conversational adventure. The Empathy Museum is a work in progress, and collaborators on this project include the sustainable designer Sophie Thomas, ecological artist Clare Patey, and film maker Rebecca Dobbs. Some ideas for what the museum might contain are available here.

I found my late wife Gill through a personal column ad "Poet seeks muse". She was all of that for me. 

I shall now go to explore the Oxford Muse and other of his ideas. 

Sadly, the other two philosophers had very little to offer. Neel Burton's thesis that all anxiety is based on death is flawed. They all agreed those of us still alive have not died. How can a psychiatrist, whose work should be evidence based, claim anxiety is based on something none of us have experienced?

Nobody contested this. Small children have no consciousness of death but they feel anxiety.

If anxiety comes from anywhere it is from primal experiences in the prenatal and perinatal matrices. Read Stan Grof's "The human encounter with death" if you want to find out more, or for a brief summary try my http://www.midwiferytoday.com/articles/birthlovedeath.asp

There was one point where the discussion became almost interesting. Roman challenged Nigel Warburton about his thoughts on how deceased loved ones impinge on our lives. Warburton simply appealed to our humanity. It might be the best response, but it simply avoids exploring the philosophy of love loss and bereavement. Roman did not pursue the matter.

I am off to see the light at the end of the tunnel now so I will post this. The philosophers did not mention near death experiences. Mine certainly made a radical shift in my understanding of life. It also had a radical effect on my fear of death. 

With so many of us having come back from the other side or the very brink of it you would have thought it would have come into the debate.

But they all seemed to agree we are all on a level playing field around death

Not true, I say.

Persephone: myth and primal truth

My late wife Gill wrote a play based on the myth of Persephone when she was about twelve years old.

I did not discover it until after her death.

In the summer of her death I decided to explore the myth of Persephone through art. I intended to make a poem to go with this work. I just have not been able to write it yet.

Persephone is the Goddess of Spring. In Pagan mythology she is the maiden aspect of the triple Goddess.

She was abducted by Hades, ruler of the underworld, the land of shades.

Her mother, Demeter, the Earth Mother, turned the earth barren in her grief and rage at her daughter's loss.

Finally Persephone was allowed to return to the world above with the return of Spring each year.

Each year at this time, when the skin separating the worlds of the dead and the living is at its thinnest, Persephone must return to be Queen of the Underworld again.

Here I am sharing a collage of images I took exploring the theme with Rebecca Tun, who was Gill's favourite model as well as mine.

Tina Negus; On the other side

On the other side

A book of poetry and Pictures by Tina Negus

              This is a remarkable book by a very special woman. Tina is not just a poet, but a painter, photographer, potter, naturalist and historian. She is also the best person anyone could turn to for support in a personal crisis. Her poem-picture art is not just words and marks on the surface of paper, it runs deep, deep into history, deep into human experience, deep into the meaning of life.

            She has chosen the title of one of her poems for the title of the book. In it she looks through a key hole into the life of a church, where the life of the place has turned into history.  Perhaps she is telling us that she has stepped outside of time to observe the passing of time. Perhaps she is telling us that she is on the side of the ghosts, or in an eternal space. Yet again, perhaps the mystery is about a faith that is lost.

            In “Gospel writer”, she says,”

                       Living words pour from my pen

                       As life ebbs from me

            Who is the gospel writer? Is it the lark rising, singing his song to the sun? Is this a pagan Goddess? Is this the author, bringing us good tidings, or is it someone who can no longer see him, concentrating only on her pen, her words?

            The poems take us back to the remotest of times, when the landscape was made by nature and then remade by man. In so many of them we go off into the long dead past, only to find it still with us, accompanying our steps as we wander with the author through the ruins of now.

            When Tina and I started the on-line gallery, Poetry and Pictures England, on Flickr, I had dreamed of large coffee table books with fine colour pictures opposite each image. Indigo Dreams publishing have offered us a slim volume, A5, with tiny black and white pictures tucked away below the poems. It is a poetry publishing house, after all. Maybe coffee table books will return if the economy ever recovers. My own book, “A journey though Grief” is given a similar treatment in its paper back form, but at least there is a colour version in the e-book (Chipmunka publishing.). Some of her pictures come out surprisingly well in black and white. Langstrothdale works particularly well.

            Love of history, love of the English landscape, love of mythic reality and naturalistic spirituality, these are the themes which are woven in threads though the great majority of the works. Occasionally she makes a foray into the grime of modern life and modern politics, but here she is not as convincing, not as connected. The modern ugliness of life impinges on her work occasionally, when she shows and tells of the violation of the temple at Avebury by unknown modern vandals.

            Three more poems to mention; “Dunstanburgh” tells the story of a castle on the coast where Kings and Lords are imagined coming and going, only to replaced by the poet coast path walker, calling out to the birds and the winds, where once there were armies. The tiny black and white image looks pixelated, a sad comment on the grandeur of the grand place the poem conjures. “Zipped” has a powerful resonance with me. I have heard that zip run over the bodies of my wife and father.

“Ziiiiiiiiiiiippppppppp

Echoing quiet, softly

My mother’s life being zipped up”

It is an unforgettable noise, an unforgettable moment. The poem tells it so well.

Finally there is the last poem, the one after “The other side.” “To one end only” tells of the end of life, the end to which we are all coming. It feels to me a very biographical story of the author’s own movement into old age and dying. Perhaps there is no other side after all. Perhaps there is no stepping out of time.

You will need to read the book to make up your own mind.

First Kick at the Bucket; http://www.kickingthebucket.co.uk/

Gabrielle and I went to The Pitt Rivers Museum yesterday to explore;

The talk was dry and barely mentioned the fish burial. It failed to mention Kicking The Bucket at all except when I asked before hand. She was aware of the festival.

In the exhibition area the fantasy coffin like a bill board for a 1950's shop front on all sides.




It was different, but not in a good way. The wooden roof was made to look like corrugated iron.

How very different from the wondrous work on the fish coffin that was shown on the video which was on a loop behind this "centre piece".

If only the film maker had been the one giving the talk. We had to rely on the short film.

20th Oct - 2.30-3.30pm | We’ll bury you in a fish – gallery tour & talk.
Pitt Rivers Museum, South Parks Road, OX1 3PP | Map No 9

Julia Nicholson on ‘Made for Trade’ exhibition highlighting the centrepiece ‘fantasy coffin’ from Ghana plus short film. See www.prm.ox.ac.uk
Suitable for adults and older children.
No need to book. (space for the first 20 people on a first come first served basis) |  |  | 

The basic idea is that the funeral casket should show what the dead person was concerned with during life.

A shop keeper would go under surrounded with adverts for his goods.

A fisherman would be buried in a beautifully crafted painted wooden fish.

What would I be buried in? Earth, air, fire, water, a burial on a fire ship pushed out to sea?
I guess I have always been afraid to be buried in the earth.

Will I leave my family to decide?

Gill was buried in a cardboard coffin. She would have liked that. She wanted to be bones as fast as possible.
She left no instructions. Joel, her young son, would not let the cover I placed on it go down with her. He also kept her teddy. The red shoes that Dorothy might have worn went down with the coffin. The celebrant wore a red dress.

I think Angela Frawley, my older daughter's mother, was also buried in card board. I am not sure. It was covered in dark blue velvet with many silver stars upon it. Everything was dictated minutely in her will. I think I chose to read my own poem rather than the one that was chosen for me at the crematorium. I always fell out with her about her controlling nature. Perhaps I misremember. Perhaps she allowed me to choose. Tony read the Yates. It is 12 years gone by now.

I can recall us buying the most expensive wooden  coffin for his casket. He would have liked that.
But maybe not; he was always thrifty in life but for the Rolls Royce and the Champagne all round on Christmas day.

My mother had a simple wooden box. She was buried next to my father who died over twenty years before her.

40 things to say before you die

Phillipa suggested we might like to explore this website/concept at some point.

I thought I would share it here.

http://www.forbes.com/sites/jessicahagy/2012/10/04/40-things-to-say-before-you-die/

Another creative response to bereavement

Check out this website here

http://beyondgoodbye.co.uk/

It uses film, photography and writing to explore responses to a

the death of a man's son in a car crash in Vietnam

Notes from our first meeting

Go to www.nickowenphotography.co.uk and click Publications to purchase "A Journey Through Grief", Nick's story of loss, bereavement, and recovery through creative arts.       

11 September 2012

Phillipa had requested someone take some notes for the Dying Matters Coalition in her absence.

I am not sure it will be that sort of a meeting. I asked people to send me comments afterwards if they wished. I am starting a web log for the group members to share thoughts, feelings, poetry and pictures, if they wish to do so.

Christine has kindly sent some “well pictures” we might use.

Four of us gathered at seven o’clock in the crypt room at The Albion Beatnik bookstore. Three others sent apologies and will be there for future meetings. Brightly coloured poetry and poets’ names spiralled or striped the walls. The place had a kind of cosiness to it. Several people ordered tea and coffee from our ever helpful hosts, Lucie and Dennis.

I allowed the meeting to evolve organically rather than follow an agenda.

We shared something of who we are and why we were there.

Poems and pictures were shared.

Personal histories emerged. All of us have been through major bereavements in the not too distant past. We have all tapped into the well of creativity to help us reach different points on the journey through grief.

We started to explore the ways we had used our creative energies to help us through the grieving process and will be continuing to do so.

There was joy in this encounter at a raw and real level. I came away feeling high.

“Fallen among angels,” was one person’s description of her experience.

After about ninety minutes I started to suggest structural elements. We discussed confidentiality without a clear conclusion.

I would prefer it if things that are shared are only confidential if the sharer asks that they be so.

Anything personal will be checked with the author before it is shared or published on line.

We decided to give ourselves until the 30^th of October before meeting again.

We may meet informally between sessions. I showed one member how to use the internet for the very first time this week.

The theme for our next meeting will be the “Kicking the Bucket” festival.

We will attend one or more event and report back.

Anticipating the kicking the bucket expression I share here a poem I read at the meeting.

Big Black Brick

At the end you did your cooking

In a big black brick

The base was very heavy

And the sides were awfully thick

The sauce would burn

While you relaxed

The washing up

It had me taxed

Impacted

Congealed

Contracted

Although it was a part of you

From which we fondly fed

I’ll never use the thing again

Now you are dead

Next meeting: 30^th October 6.30 p.m. at the Albion Beatnik Bookstore, Walton St Oxford.

                                           Welcome to the web log

We are creative artists who are concerned with death, dying and bereavement, and with ways in which art can play a transformative role in the lives of people who are dying or bereaved, and in the lives of friends and family of dead people. Currently we meet once a month in the crypt at the Albion Beatnik Bookstore in Walton Street in Oxford.

We meet to share our work, find inspiration and discuss the issues which concern us.

Publication   As time goes by we may publish things either on line or in real world media.

We support  The Dying Matters Coalition, which aims to bring the reality of death and dying out of the shadows and into the bright light of day.

On this blog you will find;

links to other helpful organisations and groups such as

The Journey onwards

http://www.kickingthebucket.co.uk/

Poetry

Pictures

Notes from meetings

Prose

Music

Contact;         You should write to Nick Owen about joining the group