Joan Marston to stand down as ICPCN Chief Executive in November


This article originally appeared in ehospice

Joan Marston, Chief Executive of the International Children’s Palliative Care Network for the past six years, has announced her retirement from the position but assures that she will continue to work as a consultant and as a Global Ambassador for ICPCN and children’s palliative care. Joan has worked in palliative care for the past 27 years and specifically in children’s palliative care for 17 years.

The ICPCN has grown enormously under Joan’s guidance and is now acknowledged as the leading global organisation advocating for and working towards the development of children’s palliative care services worldwide. In her capacity as Chief Executive, the organisation has gone on to achieve a number of important victories in the international field, including the inclusion of children’s palliative care in the 2014 Resolution on Palliative Care passed at that year’s World Health Assembly in Geneva and the holding of a Side Event on children’s palliative care at the 2015 World Health Assembly.

Mary Callaway, former Director of the International Palliative Care Initiative (IPCI) of the Open Society Foundations and a long-time supporter of ICPCN writes:

“… I think it’s fair to say that ICPCN would not be where it is today without Joan’s total dedication and leadership, bringing individuals and organizations together to better serve the needs of children and make real change possible.

Whether she is helping set up hospices in remote villages in India and Africa or meeting with leaders at the United Nations, Joan represents the very best of ICPCN and certainly no one can under estimate what she has done to develop the organisation and develop the field of paediatric palliative care.

Sharing her thoughts on her decision to stand down as the Chief Executive of ICPCN, Joan had this to say:

It has been a wonderful, exciting journey, leading the ICPCN from its’ beginning in Seoul…

… As many know, my passion is especially for children in the most vulnerable situations – those in developing countries, living in poverty and affected by humanitarian situations. So as I change my role to become a Global Ambassador for children’s palliative care, I plan to focus on advocating for better access to palliative care particularly for these children; to support development of children’s palliative care programmes; and to encourage the involvement of a truly global community of children’s palliative care Champions.

The role of ICPCN Chief Executive will be passed on to the present ICPCN Director of Research and Education, Professor Julia Downing. She will take up this position from 1 November 2016.

Pain – when it affects the person


This article originally appeared in ehospice.

The theme of World Hospice and Palliative Care Day 2016 is: ‘Living and dying in pain: It doesn’t have to happen’. ehospice, with permission from the Journal of Pain and Palliative Care Pharmacotherapy, is drawing on narratives to highlight the effect of pain on people and families, and the value of palliative care and pain control in addressing this issue. Follow the life story R.K. and the effect of pain. Click here to read the full story.

Here are some takeaways by the author:

  • Unrelieved pain has a devastating effect on the sufferer.
  • One should look for pain by asking the simple, direct question.
  • Most of the time, pain can be relieved by relatively simple means.
  • When pain is relieved, the whole attitude of the patient changes.

75% of the world population does not have adequate access to controlled medications for pain relief. As a result, millions of people suffer from pain which is avoidable and could be managed with proper access to the correct medications. Find out how you can play a part during the World Hospice and Palliative Care Day by visit the WHPCA website.

Cataloguing the archives of Dame Cicely Saunders (1918-2005)


Dear friends

Please help to share a new e-resource link, Dr Dame Saunders’ online archives, to be added to APHN’s resource page under “Publications”!

To mark what would have been Dame Cicely Saunders’ 98th birthday, archivist Chris Olver writes for ehospice about a recent project he led to catalogue Dame Saunders’ archives, which are housed at King’s College London.

The project began in January 2015 with a survey of the three accessions of Saunders’ papers deposited at King’s between 2006 and 2009. The main task was refining the existing box lists and working out an arrangement for the overall collection.

The catalogue can be viewed on the King’s College London website. It contains correspondence, notes, reports, research data, diaries, photographs and artefacts relating to the life and work of Dame Cicely Saunders from 1918-2005. It includes case notes, correspondence, research data, interview transcripts, history of the hospice movement, notes and drafts for lectures, talks, as well as recordings of talks and interviews by Saunders…read more

This article originally appeared in ehospice

Professor Julia Downing awarded Honorary Fellowship from Cardiff University


This article originally appeared in ehospice

Professor Julia Downing received an Honorary Fellowship from Cardiff University on 14 July in recognition of her international work in palliative care.

On 14 July, Professor Julia Downing, Director of Education and Research for the International Children’s Palliative Care Network, was awarded an Honorary Fellowship at the annual Graduation Ceremony at Cardiff University in Wales.

The University awards Honorary Fellowships to those who have achieved international distinction in their field.

In addition to being the Director of Education and Research for the International Children’s Palliative Care Network, Professor Downing is an Honorary/Visiting Professor at several universities including Makerere University in Kampala, Uganda, the University of Belgrade and Edge Hill.

She is an experienced palliative care nurse, educationalist and researcher, with a PhD that evaluated palliative care training in rural Uganda. She has been working in palliative care for 26 years, with seventeen of these working internationally in Uganda, Africa, Eastern Europe and throughout the world, developing palliative care services for adults and children.

Julia moved to Uganda in January 2001 and worked initially as the Director of Education at Mildmay Uganda, before moving to the African Palliative Care Association and now Makerere University.

Julia is known and respected internationally as a leader in the field of palliative care and has contributed to numerous relevant textbooks, journals and conferences.

At the ceremony last night she gave an inspiring speech to the over two thousand strong audience, most of whom being recent graduates in the medical field. She encouraged those starting out in their careers to always be proud of their chosen career, to take risks and to consider opportunities which call on them to step outside their comfort zones.

Asked to comment on this prestigious award, Professor Downing told ehospice, “I am honoured, delighted and excited to receive the award and accepted it on behalf of everyone I work with across the world, improving access to palliative care.”

International Update on Pain Management and Palliative Care Advances held in India


This article originally appeared in ehospice

After a great deal of preparation and organisation, the last weekend of June saw the first pain and palliative care conference in Uttarakhand, India. The event: ‘International Update on Pain Management and Palliative Care Advances 2016’ was organised by the Shri Guru Ram Rai Institute of Medical and Health Sciences (SGRRIM&HS) and the Indian Medical Association (Dehradun). The landmark conference was conceptualised by Dr Mayank Gupta (organising secretary), Assistant Professor and leader of the Pain and Palliative Care Unit at the Shri Mahant Indiresh Hospital.

The didactic scientific programme as designed by Dr Gupta emphasised not only the basic principles but also the recent advances in the field of pain and palliative medicine for the benefit of both the nursing and medical students as well as the doctors from the diverse field of medicine who participated in this conference…read more

New guide to support young people through transition to adult services


This article originally appeared in ehospice

Due to medical advances, more and more young people with life-threatening health conditions are outliving their prognosis and making the move from children’s to adult services.

Life as an adult with a life-threatening condition can be very different to that experienced within children’s services.

The new guide, which has been co-produced with young people, provides information to plan the transition to adult services and to empower young people to plan their lives as they want to.

The first section of the guide outlines what young people can expect at different stages of the transition process to adult services, and the second section focuses on different aspects of life that young people may want to plan for as an adult, such as education, employment and living arrangements.

The guide ‘Moving to adult services: what to expect’ can be downloaded for free from the Together for Short Lives website.

Music therapy brings relief to children with cancer

This article originally appeared in ehospice

“If a patient is anxious and distressed they’re going to feel their pain more acutely, so if we can help them feel better and less distressed then they’re going to experience less pain.” 

774 ABC Melbourne recently published an article about the important role of music therapy in easing pain for children with cancer and palliative care needs.

“There is one room in the Melbourne Royal Children’s Hospital oncology ward where there are no doctors, no beds and no mention of cancer.” Every Wednesday, music therapist Lauren Miller gives the seriously ill children at the hospital a chance to sing, clap their hands, laugh and relive a part of their pre-diagnosis childhood. Lauren said the following about the weekly sessions, “it connects them to their healthy self and provides some normalisation to the hospital experience. It’s the familiarity of activities and knowledge from what life was like before their diagnosis. Quite often you see this little snippet of the person before they came in here.”

One child who has benefited from the weekly sessions is 2 year old Harvey who had been in the oncology ward for four weeks after a devastating diagnosis that he had a tumour on his abdomen and lung. Harvey came into his first session screaming and crying and clinging onto his mother, “I’m not inside Harvey’s head but from watching him it looked like he was unsure what was happening. He was probably expecting a procedure but he looked pretty terrified. So I thought if I could provide a bit of music it might give him some context that he was coming into what I hope was a safe environment for him,” said Lauren. Lauren soon began strumming her guitar and singing and immediately Harvey’s cry softened and he lay on his mother’s chest observing the rest of the children singing.  Claire Sartori, Harvey’s mother said “I thought it was really amazing that the act of music connected with him – it’s not a scary thing, it’s what he did at childcare. I can see there’s some level of comfort there and definitely there’s a change in him compared to when he is in his room and staff come in – he is usually crying and really distressed the whole time.”

The Melbourne Royal Children’s Hospital music therapy programme has been running for 25 years. Beth Dun, founder of the program, believes that the perception of pain was one area in which music therapy could make great differences. She said, “If a patient is anxious and distressed they’re going to feel their pain more acutely, so if we can help them feel better and less distressed then they’re going to experience less pain.” To read this full article, click here.

What does Brexit mean for UK hospices?


This article originally appeared in ehospice

Jonathan Ellis, Director of Policy & Advocacy at Hospice UK wrote an article in ehospice regarding Brexit and UK hospices. Here’s an excerpt of the article

‘Business as usual’

Beyond the high politics of the last few days, the close result of the referendum means that our country is divided, and hospices are not immune to that. Our staff, volunteers and supporters will all have different views on the outcome as well as the issues involved.

It’s vital to ensure that everyone coming into contact with us – whether as a patient, a family member, a supporter, donor or customer of a charity shop – continues to feel comfortable and welcome, regardless of who they are or their views on the outcome of the referendum.

For instance, personal views expressed by staff and volunteers could easily and inadvertently alienate supporters and donors.

Our focus should be on working together through these uncertain times, and healing some of those divisions…

Read the full article on ehospice.


Mobilising the community for the provision of palliative care in Nepal


This article originally appeared in ehospice

Nepal has a population of 28 million with 87% of the population living in rural areas. These communities are often isolated and inaccessible because of the country’s mountainous terrain.

Based on the best available evidence, it is estimated that at least 112,000 people each year in Nepal will be in need of palliative care.

Whilst palliative care is developing in some urban centres, most rural areas are without any palliative care at all.

As a low-income country, healthcare resources in Nepal are over-stretched even in major cities, with people in remote areas often only receiving the most rudimentary healthcare.

Nepal is also experiencing a demographic shift as life expectancy increases with the successful control of infectious illnesses and improving maternal and child health.

The result is that there are increasing numbers of older people and people living with non-communicable diseases in the community.

As has been demonstrated in other areas in low and middle income countries – particularly Kerala in South India – empowering local communities to develop a vision for caring for their frail elderly and those with advanced illness is an important step in providing comprehensive palliative care.

Community empowerment is particularly vital in Nepal as the traditional extended family structure is weakened, with younger family members moving away to work in cities or overseas.

For a number of years, there has been a small palliative care service based at the Green Pastures Hospital in Pokhara.

The invitation to deliver a workshop emerged from the advocacy for palliative care undertaken by the Green Pastures Palliative Care Service.

Over 60 women of all ages from Pokhara and the surrounding area enthusiastically participated in learning about palliative care – why, what, where, for whom, how and when.

They were taught listening and communication skills and gained ‘hands-on’ experience in caring for someone who is bed bound, including: changing sheets, washing hair and positioning for maximum comfort.

The workshop was facilitated by two palliative care nurses, a counsellor and an Australian palliative care physician who lives in Nepal.

This workshop is just a start. We have a vision to develop this work further extending it to other community groups.

By adapting palliative care training materials, making them culturally appropriate and helping groups to organise themselves to provide care in the community, our aim is to develop ongoing support structures with long-term sustainability and a model which is appropriate for Nepal…read more

We strongly welcome any palliative care worker to share your experiences and stories with us. Please feel free to email Joyce at your photos and and with a short description today!

St Christopher’s visits Singapore to share ideas and insights on preparing for an ageing population


This article originally appeared in ehospice

St Christopher’s joint chief executive Heather Richardson and director for supportive care Ruth Sheridan were recently in Singapore for the 7th Ageing Asia Innovation Forum. Heather writes for ehospice about the experience and what they learnt about hospices in Singapore.

“While in Singapore, we also had the opportunity to visit two local hospices – Dover Park and HCA Hospice Care.

Many of our challenges in the UK are shared by professionals working there, including a tired workforce, growing levels of need and difficulties recruiting skilled staff in sufficient numbers.

They share similar aspirations too – an interest in outcome measures, a desire to think carefully about reducing inequalities in provision and access, and an intention to use more volunteers to do different things.

The learning between the three organisations was reciprocal and valuable, confirming the value of a global community in palliative care to find solutions to some very complex issues…read more


Institute of Palliative Medicine organises the first ever state level conference of palliative care nurses in India

This article originally appeared in ehospice


Nurses working in palliative care in Kerala joined together to organise India’s first state-level conference of palliative care nurses – Nurse PALLICON 2016 – with the theme: ‘Encourage, Educate and Empower’.

The conference, organised through the Institute of Palliative Medicine, Kozhikode, jointly with the Association of Palliative Care Nurses, Kerala, was held on 22 and 23 April 2016. The event took place in Kozhikode with the participation of more than 550 delegates.

Brilliant sessions

“I am sure that the future of palliative care services in Kerala is safe in their hands. They have proven it again through this well-organised conference with scientific sessions of good standard, said Dr Anil Paleri, Director of the Institute of Palliative Medicine.

“Well informed, learned and experienced nurses presented brilliant sessions. I feel proud to be a part of this.”

Dr Paleri continued: “Apart from being the first such initiative in the country, the significance of this conference lies in the fact that all the presentations were in local language. It is important that the nurses who work at community level should be encouraged and provided opportunities to share their experiences and learn from each other.

“This is done best through a language with which they all are comfortable. The big conferences do not provide such opportunities for many as the medium of deliberations will be English.

“We need to organise more educational programmes and conferences in local languages for the benefit of those magnificent people working at community level. This has a greater significance for India where there are more than 15 official languages.”

An excellent platform for professional growth

Ms Sinimol K. V., chairperson of the conference organising committee, noted that when the group had formed an organisation for nurses in palliative care in Kerala a year ago, their aim was to provide an excellent platform for professional growth.

“This conference is our first initiative in this direction,” she said. “We are committed to doing more. Without updating skills and knowledge, we are not able to deliver good quality care to the needy.”

The scientific session started with plenaries on: ‘The Role of Nurses in Palliative Care’, ‘Challenges in Home Care’, and ‘Infection Control in Palliative Care Settings’.

Senior nurses, Mrs Geetha, M., Ms Shyni, M. and Mrs Chandralekha, K. P., were the speakers in the plenary session. This was followed by an open forum discussing various aspects of palliative care services in Kerala.

Learning from the experts

On the second day, the focus was learning from the experts. With this aim, four parallel workshops were organised on: lymphedema management, colostomy care, communication, and culture and spirituality. Senior nurses led these workshops.

Simultaneously, symposiums on end of life care and basic patient care were organised and here most of the topics were presented by youngsters. Their presentations proved the in-depth knowledge they have gained through hands-on experience.

The morning sessions were followed by plenary sessions on two important topics: children’s palliative care and caring for patients with Alzheimer’s disease. Dr Anil Paleri and Dr K. S. Shaji, Head of the Department of Psychiatry at the Government Medical College in Thrissur, were the speakers.

“Both these talks were very useful for us, because we find it more complicated to provide care for children and elderly people,” said Ms Shyni. “Expert training in caring for patients with Alzheimer’s disease is the need of the hour, as the majority of our patients are now older people with age-related problems.”

Enthusiastic debate

As in many other conferences, the debate was the most exciting session. The enthusiasm of the participants was truly unleashed during the debate competition.

The topic was: ‘Should a nurse be the leader of home care?’ Those who spoke for the topic argued that none other but the committed nurses should be the leader to provide good quality care whenever the patient needs it. Those who spoke against argued that, in a state like Kerala, where palliative care is a community movement, the home care services also should be led by volunteers.

This landmark conference ended with a plenary on psychosocial issues by Dr Shibu Kumar, Assistant Professor at the Institute of Mental Health and Neurosciences in Kozhikode.

“The feedback from the participants has been really encouraging,” said Ms Sinimol, organising chairperson. “We are planning to continue organising Nurse Pallicon with good scientific sessions in the years to come.”

Update on implementation of the 2014 World Health Assembly resolution on palliative care – report released


Dear friends, the Civil Society organisations working in palliative care have published a report on the implementation of the 2014 World Health Assembly resolution WHA67.19 on palliative care. You can the article about it on ehospice.

The report can also be downloaded from the Worldwide Hospice Palliative Care Alliance website.