I will take home with me my own bag of treasures for my continuing work and journey plus a sense of being refreshed and rested, heard, taught, challenged and having met with God. I would recommend these conferences to anyone working in Palliative care. Sue Pullen

The whole experience is still vivid and all I can offer are some words that, for me, convey the essence of the conference. An incredible welcome in an incredible place. Challenge and restoration. Old and new friends. Times of quiet and times of joyful noise. Quiet reflection and stimulating discussion. Prayers and presentations. Sorrow and joy. Practical solutions and the power of prayer. Words and silence. The personal cost of this most challenging field and its immeasurable rewards. Acknowledging dying in order to live fully. The importance of planning and the importance of prayer. The loss and regaining of hope. The clouding of intellect and the clarity of remembered faith. The cry for euthanasia and the need for palliative care for all. Physical change and the keeping of faith and the essence of self.

I shall return from Scargill enriched, re-invigorated, and re-challenged. Thank you to everyone who has worked so hard to make this week such a God-filled success. To borrow a theme from Dr Tuckwell, I am going home with my bags packed to overflowing. Carolyn Watt

Scargill 2005
At the Help the Hospices Harrogate Conference in September, David Praill gave a clear call to “reach out with this ‘work of hospice’ to the many who don’t have access to it.” He also warned delegates against being so locked into their specialist palliative care mode that they fail to meet patients at their point of greatest need.

Tying in with this, Keri Thomas at Scargill shared her vision of Primary Health Care delivering mainstream palliative care for all, utilising the End of Life Initiatives which she has strived so passionately to promote, so that patients can have a good death at home. For me, managing Hospice at Home in South Essex, one of the biggest challenges to achieving Keri’s vision is how we teach “hospice care” to the hundreds of frightened, inexperienced social carers currently delivering front line care to dying patients, supported by community professionals who are often themselves equally anxious and inexperienced when faced with the dying.

Ron Ayres’ insightful presentation on the first evening set the scene for the whole conference, and provided an answer to this challenge. He shared a quotation from DH Lawrence about “the sacred ground between the teacher and the pupil.” I believe that hospice in its wider sense is the “sacred ground” from which must come the teaching that is needed to deliver Kerri’s vision. And then, when everyone has access to palliative care, the Assisted Dying Bill will have no purpose. Rosalind Matty

Every time I think of this conference, I go back (in my mind) to May 2003. It was at Lee Abbey that year, that Prue set the plans in motion, by challenging Marianne and me ‘to organise a conference in Dublin, and we will come’! At the time of the conference, sadly, Prue could not be with us in person, but we were both very aware of her presence with us as we planned and organised what was to be the first Southern Irish Conference for St Columba’s Fellowship.

The planning began right back there in May 2003! on the boat home, that we started thinking about venues, and dates. The progress went on from We felt that being in Ireland, and feeling led towards theme of ‘Spirituality’, that ‘Celtic’ had to be in somewhere – hence the chosen theme.

Both being very aware of the differences between hospices in Ireland and the UK, we were very unsure of how much interest there would be from our local scene. I attended my first conference in Scargill in 1994, and until Marianne came with me to Lee Abbey in 2003, I seemed to be the only interested party! How wonderful it is to know that 8 from the Dublin conference are meeting in my house for dinner, followed by fellowship together, on October 26th. God never gives up!!

It was when our sample programme was circulated, that we were approached by Milltown Institute, asking whether they could use our conference as the first week of their Spirituality Summer School. We were a bit taken aback, approached Gareth and Pauline, who, after discussion with the Trustees, said to go ahead and discuss arrangements. We knew that with those numbers, the lecture hall in the Theological College would not accommodate everyone. Milltown kindly agreed to let us have their lecture rooms – thereby making a 2-centre conference.

The draw-back of the two centres were: – transport to and from Milltown Institute, and the fact of not being close to the accommodation during the day for people to rest in their rooms. If we were to run another conference here, it would be all in one place. Any Dublin people would probably still be non-residential.

Overall, we were very pleased with how went – in fact I was sorry when it came despite people thinking I should be relieved! Marianne and I are both looking forward back seat’ at Scargill, and really looking catching up with everyone again.

20 YEARS ON – MILDMAY’ S JOURNEY WITH HIV/AIDS
by Dr. Veronica Moss, Chief Executive & Chief Medical Officer of Mildmay Mission Hospital, a charity incorporating a UK hospital and number of international HIV/AIDS programmes of holistic care and training

On the 14th October 1985, the doors of Mildmay Mission Hospital in the East End of London, flung open its doors again after three years of closure by the National Health Service. This small voluntary Christian hospital had originally been built and opened in 1892 in memory of Rev. William Pennefather, a man of God, known affectionately as ‘Holy Willie’, who initiated many ‘good works’ in the slums of East London. It was taken over by the NHS in 1948, then closed down in 1982 as being too un-economic to run. After three years of hard work by supporters, a march to Trafalgar Square, feasibility studies and presentations to the Minister of Health (Kenneth Clarke at the time), it was allowed to revert to its original voluntary status and open as a Christian charitable hospital. Its remit was to serve the local population, meeting some of the needs that were not being met by the Health Authorities or by other voluntary services.

This marked the beginning of a remarkable year, during which Mildmay’s staff, led by newly appointed Ruth Sims as Matron and Dr. Veronica Moss as Medical Director, had to learn a great deal about AIDS, to change many preconceived ideas, to let go of long-held prejudices and fears in order to provide a warm welcome and holistic care for people who were dying of AIDS. In those days the majority were from the gay

community, and there was much stigma and fear associated with the disease. There was also much prejudice against Christians among the gay community, and we all had to work hard to begin to understand each other better and to find acceptance and a way forward. The local community, too, had to come to terms with issues they would rather not think about or have in their midst. Bricks and bottles hurled with much verbal abuse towards the hospital windows, or at staff seen walking in the grounds, were met by us with a quiet invitation to come in, talk to us, meet the patients (this was before we even had any with AIDS!). However, Mildmay’s Board and senior staff believed that God had called us to go into this work, and we persevered in spite of all the opposition we met (even from Christians). In February 1988 we opened Europe’s first hospice unit for people with AIDS.

Much has happened since then. God has led us in remarkable ways, opened unexpected doors and led us into the international world of HIV/AIDS care and training, especially in Africa. He has resourced us amazingly in both financial and human terms. Mrs. Taylor Thompson, then the Chair, now the President, is a visionary and energetic fundraiser who led the Trustees in those early years. Ruth Sims, initially appointed as Matron, later becoming Chief Executive Officer, is a remarkable nurse, also a visionary and leader with a real heart for all with HIV/AIDS, especially children. She joined with Dr. Veronica Moss to lead the developments at the Mildmay Mission Hospital and then into the wider world. A wonderful team of people, with commitment and compassion, has joined them in the UK and in Africa to demonstrate high standards of holistic care and to teach doctors, nurses, counsellors and many others how to care for adults and children living with HIV/AIDS.

In 1991 the whole hospital was dedicated to HIV/AIDS care. Two years later we received an invitation to open a centre for care and training from the government of Uganda. The Mildmay Centre, funded in the main by the British government, was opened by Princess Anne in 1998 and is now seen as one of the foremost HIV/AIDS Care and Training Centres in East Africa. It provides out-patient care to large numbers of adults and children. In 1998 Dr. Veronica Moss went out to live in Uganda for nearly 5 years, to run the Centre and to train local staff. It is now also a regional centre for training of doctors and nurses, and other health workers, in how to care for all those who are living with HIV/AIDS and their families and communities.

In the year 2000, Ruth Sims conceived the idea in response to overwhelming need, to set up, as a second project in Uganda, a specialist rehabilitation Day Care Centre for children with advanced AIDS who needed more than could be provided at the out-patient clinics being run by The Mildmay Centre. In Luganda the word for ‘grandma’ is ‘ Jajja’. Ruth, who, as Chief Executive Officer of the charity, had led the development of the Mildmay Centre, was known to all the children as ‘Jajja’ and they called the new house she was building ‘Jajja’s Home’. So the Mildmay Jajja’s Home Children’s Programmes started, the first building being opened in November 2000 to children under 12. Ruth’s successful fundraising brought support from Spring Harvest, a company called Keymed and a number of individuals and churches The Jajja’s Home programme has now developed into three age related day care houses, a small hospital for children needing intensive rehabilitation or terminal care, and eight rural day

care programmes spread across Uganda, including some work in an Internal Displacement Camp in the north. Ruth, having taken early retirement works full time as a volunteer in Uganda, with the children who have captured her heart and on whose behalf she speaks most eloquently. These children are often the forgotten ones, whose needs are ignored, but in her they have found a real champion. She now works full-time as a volunteer in Uganda as the Director of the Mildmay Jajja’s Home Children’s Programmes.

Mildmay’s work continues to expand with the epidemic. Since 1998 we have had an office in Kisumu, Kenya, and have a very active programme of training and supporting the development of Home Based Care Programmes for people living with AIDS. A similar programme was started in Tanzania in 2003. Mildmay has been working in Zimbabwe since 2002, where maybe up to one third of the population is infected, focussing on the needs of children through the development of clinical care and community outreach and support, and more recently on training of health workers. We are also involved in training in Nigeria, South Africa, Malawi, Eastern Europe and elsewhere in the world.

On October 14th 2005 Mildmay celebrated 20 years since the re-opening of the hospital in London as an independent Christian charitable hospital. We thanked God for the amazing ways in which He has led the charity since then and committed ourselves to Him for the future – and if the past is anything to go by, then the future promises to be just as amazing!

The Trustees met overnight at Burrswood in October. We were fortunate to have Rev Canon Anne Long with us to lead our times of worship, to speak to us from God’s word, and yet to keep our feet on the ground too! You will read a little of what she shared elsewhere in the Newsletter. We were also blessed in having with us Lorraine Burt, our first regional representative, two spouses of trustees, Sheila Smith and Karen Bishop, John Matty, our treasurer and Marina O’Brien, secretary.

We came away believing that for 2006 it was especially important to:

• Consider a new strapline:
  'Sustaining a Christian presence at the heart of palliative care’. We believe this accurately communicates our aim. What do you think? Can you do better? Do email Pauline Thompson with your thoughts.



• Build on the concept of Regional Coordinators, drawing from the learning of Lorraine’s pilot work. We now have a Regional Coordinator in Dublin (more to come on that) and a number of others are feeling led to take on this role in one form or another. If that might include you, do have a talk to Pauline Thompson and ask for a ‘role description’.



• Plan regional or individual hospice (or team) days for spiritual refreshment, sharing and reflection for all interested palliative care professionals.



• Research the need for shorter conferences and new venues. Get ready to respond!

DAME CICELY SAUNDERS
A tribute by Dr Anthony Smith

Dynamic, intuitive, inspiring – how shall we describe Dr Saunders? I so well remember someone making her way through a group of forty or so people talking away to each other in the reception at St Christopher’s, and a sudden hush falling on all of us. Forty pairs of eyes focussed on a lady talking to the receptionist, and then she turned and greeted us. What a presence!

Those Friday visits were a compelling introduction to hospice care for many of us. Dr Saunders had an encyclopaedic memory for individuals, hospices and situations worldwide. Greeting each individually, she was interested in all they had to tell of their own work, and then she would ask after colleagues or tell of others working in the area, all the while making relevant comments about the principles of hospice care. That introductory hour opened into tour of the hospice, meeting with other staff members of relevant specialisms and much discussion. But meeting The Dame remained the highlight for us all!

During my seven years working at St Christopher’s Dr Saunders remained inspirational. She was always so interested in the people she met, and notably her patients. I remember her sitting at the bedside of an elderly Polish lady, listening intently as she described her current symptoms. There were weekly Grand Round meetings when Dr Saunders would challenge an inept comment on someone’s part with an intuitive question, or reminder of a forgotten fact. For the hospice’s research-ethics committee she had gathered an impressive group of specialists, and at those meetings we saw something of her wisdom and extensive knowledge coupled with the humility to learn and ability to question.

She never seemed too busy to listen, although for me visits to her office always carried something of the feel of being summoned to the headmaster’s study! The presence was very powerful there!

I last met Dame Cicely on Rugby ward at St Christopher’s during one of her own symptom-control and respite stays at the hospice, during her final illness. She was as alert as ever, and, as ever, interested in her visitor. How is your wife? And the boys…(my sons)? What are you doing now, and how is your hospice? And then, Have you read…(the most recent theological comment)? She was, even then, keeping abreast of professional and Christian thinking, and still aware of where her visitor’s interests would be.

What an immense privilege to have known and worked under The Dame! In palliative care we all owe her an immense debt of gratitude, and not only we who work in hospice and palliative care, but all those people worldwide whose life with advanced illness has been eased by Dr Saunders’ skill and wisdom.

At the last Trustees Meeting Rev David Price, who has been a Trustee for many years decided it was time to step down. David has been a much loved and valued member the Trustees and has been both Chairman and Vice Chairman and he will be greatly missed. There will be an opportunity the next Newsletter to express our gratitude to David and to his wife Barbara who will be joining us for a celebration at the Trustee Meeting in January.

Also stepping down with reluctance is Janet Curmi our Overseas Coordinator. In her short time working with those from Overseas Janet has become much loved and will be sadly missed for all her wonderful contribution of organising visits and for her warm hospitality. Again we are hoping Janet will join us at the January meeting to celebrate her time with us.

Many of you will know Marianne McGiffin from Dublin, Ireland who, with Sheila Chamberlain, organised the conference in June this year. We are delighted that Marianne has agreed to accept the post of Trustee and will join us from February 06. Her expertise in Medical Education will be a great asset to our work and her lively sense of humour and her insights will be much valued. Again we will introduce Marianne more fully in our next Newsletter.

Please continue to pray for the Trustees at this time for the Lord’s wisdom for the many decisions that need to be made.

Pauline Thompson.

During the past year PRIME has seen an amazing spread of work abroad. Twenty-seven tutors have been involved in thirty-four teaching trips, involving 191 hours abroad on behalf of PRIME. That is, the equivalent of nearly four and a half person-years of service! Countries visited have included Albania, Bulgaria, Romania, Egypt, Russia, India, Nepal and indonesia.

Four trips have been for palliative care. In February two tutors went to Nepal to provide a face-to-face teaching and assessment module for a distance-learning course in palliative care for 32 Nepali doctors – and they have been requested to make this an annual event, it was so much appreciated. September saw one of our tutors teaching at a CMF Summer camp for medical students in Belarus. In October two of us went to the Hospice of Hope in Brasov (Romania) to lead a hospice retreat and lecture to GPs in the town. Finally, two tutors are visiting Indonesia in mid-November to help train doctors, nurses and volunteers in the care of people suffering from post-traumatic stress disorder following the tsunami. It feels an incredible privilege to visit dedicated folk in these needy situations, and to take a share in providing them with support, and to assure them of Christian love!

The Palliative care section of PRIME is still seeking tutors from among Christian palliative care-trained nurses, doctors, therapists, chaplains, social workers and counsellors. Anthony Smith will be delighted to send information to members of the Fellowship who are interested. You will not be sent abroad on your own! Please contact anthonynsheila@waitrose.com for further details.

Editor’s Slot:
I am writing this from Scargill House, on the first afternoon of the annual Palliative Care Conference. I have been deterred by the rain from venturing out, but no matter! The scenery is as beautiful as ever, and can be gazed at through the windows during the daytime sessions. Already, and as always, I am amazed how one talk is building on the one before, even though the speakers have not compared notes! This both challenges and reassures, reminding me that God is in control of the week, and that he knows where each one of us has come from, and what we need to hear.

The conferences always refresh and revitalize, and constantly bring us back to basics, and the very reasons why many of us entered this field of work. In a few days time, in my talk, I am going to ask – is it a vocation? I wonder what you think? I hope to have some of the talks adapted for inclusion in future editions of this Newsletter.

I hope you find the variety of articles in this edition of interest. Please pass your copy around and point your colleagues in this direction! I would love to hear your news and views, please do contribute to the next edition. And if you have never been to a conference then consider booking for Lee Abbey in May 2006 – I would love to see you there.

Jean Maxwell
email: jeanfmax@btinternet.com

Roots
a meditation by Rev Canon Anne Long

Autumn is a season of promise. Even though it looks as if everything is dying off, a great deal is going on under the ground. As I was walking along the Avon Valley path in the rain with the scent of damp earth in my nostrils, I noticed how the falling leaves were already forming a rich mulch to feed the tree roots in preparation for the upward thrust of new life that will happen next spring. If the roots dry out they can’t sustain and feed the tree. They are being well mulched at present but the work is hidden.

So much of Jesus’ teaching about the Kingdom he had come to establish was about hiddenness - the yeast in the lump of dough, the treasure buried in a field, the tiny mustard seed which would one day grow into a tree. God at work by his Spirit in the hidden, deep-down places

Two questions occurred to me –

How are the roots of the hospice movement being sustained and nurtured?
Although it was born in a distinctively Christian ethos and on a clear Christian foundation, the hospice is becoming increasingly secularised. Yet Christians can still, through their involvement as staff, volunteers and supporters, nurture and tend those roots. A volunteer in her 70s whom I know and who gives regular help at the hospice, gets up at 5.30am

each day and sits in her kitchen for an hour simply being in God’s company and absorbing his light and love. She is much loved by patients and staff as she quietly quietly passes on that light and love to others. She says it’s her daily place of receiving and resourcing.

How are your own roots being fed and nourished?
When was the last time you felt resourced for the demands of your daily life? What is it that tops up your energy and hope when you feel tired or low? It may be friends or Christian fellowship, a good walk, a meal out, a shoulder to cry on, a good laugh etc. Not everyone can cope with rising at 5.30am, but we all need times and places of resourcing. And don’t forget, St Columba’s provides conferences and the occasional quiet day geared to resource you. These days there’s a lot that conspires against living resourced lives, yet God longs to nourish us deep down in such ways that our roots are fed and other people through us.

He said ‘Blessed is the one who trusts in the Lord, whose confidence is in him. He (and she) will be like a tree planted by the water that sends out its roots by the stream. It does not fear when heat comes; its leaves are always green. It has no worries in a year of drought and never fails to bear fruit.’ Jeremiah 17: 7,8.

As we tend the root places of our lives God will, in his own way and time, produce fruit which will feed and nourish both ourselves and others.

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