Author Archives: Sue

Children’s palliative care champion & ICPCN Board member receives MBE for her work in China

We are very proud of our International Board of Trustees member, Lyn Gould, on her recent award of an MBE from HRH The Princess Royal at Buckingham Palace in London. Congratulations from all of us at ICPCN, Lyn.

On Tuesday 17th October 2017, Lyn Gould, was officially awarded her MBE (Member of the Most Excellent Order of the British Empire) by HRH The Princess Royal in the Grand Ballroom, Buckingham Palace for the work she has done for the children in China through Butterfly Children’s Hospices. Lyn travelled to London with her husband and charity co-founder Alan, her mum, her son and daughter in law and her beloved grandsons, who would all be present for her big moment. She shared her thoughts from the day in a blog that can be found on the Butterfly Children’s Hospices website.

Lyn paints a colourful and poignant picture of this memorable day in her blog, describing her feelings on being one of those chosen for this prestigious award, the magnificence of their royal surroundings, the joy of having her family there to share in this special day and the moment that HRH Princess Anne attached the MBE medal onto her dress and chatted to her about her recent visit to Butterfly Children’s Hospice in China.

Vividly recalling this moment, Lyn writes,

“My turn came. As I waited in the doorway, the usher chatted and adjusted the angle of my hat, advising me to look upwards a bit so HRH could see my face. Before I knew it I was moving forward into the room to wait by the big guy in the uniform, ready to move on when I was announced and my surname was spoken (if I didn’t move at the right moment he would push me in the back!).

Lyn with her proud family

“Actually I was really happy and proud, my family were smiling broadly and I was praying I wouldn’t fall over my own feet as I curtsied – I didn’t. One, two, three, turn, curtsey and walk forward, toes to edge of dais. HRH was smiling broadly and popped the medal onto the hook placed on my dress earlier. She chatted about her visit to Butterfly in July and hoped it would have done some good to the charity and the future of children’s palliative care in China. Then she was shaking my hand and I was trying to walk backwards elegantly in shoes that were actually killing me by then, curtsied (of a sort) turned and walked slowly out – beaming at my family, so happy they could share the day with Alan and me.”

A glass heart and a piece of jade on a red thread 
Hidden from sight, Lyn carried with her a special little bag that was tucked in her clothes over her heart. The bag contained two objects, a glass heart representing all the children and families cared for in the Butterfly Home and a small piece of jade on a red thread representing all the children lost in the system, and their parents who have ‘lost’ these children and cannot know what has happened to them. Lyn writes,

“I wanted them all to be there as they are such a huge part of the story and of MY story. They have moved me and shaped the woman I am now. I wanted to honour them and give them dignity – to be there as the honour was conferred. Just as my family was there, the children and their families were there too.

The contribution of others
Acknowledging all those who have contributed to the success of the Butterfly Children’s Hospices, particularly her husband Alan, Lyn writes,

Lyn and Alan Gould proudly display the MBE at Buckingham Palace

“People have been very thrilled by this award to me (as of course I am) but an award like this rarely represents one person’s efforts. It may be that only one person gets the medal but in reality it has been the hard work and sacrifice of many, in this case – particularly Alan. To sell your business and leave the life you have built in England for the unknown of China is a major step of love, courage and faith. It was Alan who organised all the renovations, doing much of it himself, set up the admin and finance systems, shopped, cooked and generally looked after me, keeping me sane and driving me mad in equal measure – as I’m sure I did him! He loved the children and there was nothing he wouldn’t do to make sure they were well looked after and happy. He modelled a loving father, playing with them, comforting them when they cried, weeping over them in his arms as they died.

“Since I heard about the award I have tried to recall all those who have played a part in the story, realising it is impossible! This one will be foranother blog post someday! But for the time being, I am extremely thankful to everyone who has contributed to this dream and enabled us tomake a difference for so many children so far, and for all of those children to come through our doors in the future. Thank you to each and  every family member, friend, trustee, donor, volunteer, supporter from across all corners of the World and to the Chinese government officials  who have backed this dream – without each hand who has helped, this would not have been possible.”

Read the complete blog here.

Submission of abstract deadline extended for 3rd ICPCN Conference in Durban

Perhaps you forgot or didn’t get around to submitting your abstract for the 3rd ICPCN Conference. If so, there’s good news. The organising committee of the 3rd ICPCN Conference are pleased to announce that the deadline for the submission of abstracts has been extended by 2 weeks to Friday 24 November 2017.  

All members of the multidisciplinary team, including students, researchers, professionals, volunteers and parents are welcome to submit abstracts for this bi-annual conference taking place from 30 May – 2 June 2018 at the Southern Sun Elangeni Hotel in Durban, South Africa.

Abstract topics

Your abstract should fall into one of the following three topic areas:

  1. Inspiring others about Children’s Palliative Care
  2. Innovations and research in Children’s Palliative Care
  3. Integration of Children’s Palliative Care in Health, Social & Education Systems


A reminder that there are 10 IAHPC Travel and Registration Scholarships available for the conference. Only those who have had an accepted abstract for a poster or oral presentation for the conference will be considered for one of these scholarships.

We look forward to receiving your abstract and welcoming you to Durban!

Seminar: Understanding International Research on Children’s Palliative Care – The ICPCN Experience

Professor Julia Downing will address the topic Understanding International Research on Children’s Palliative Care -The ICPCN experience at a seminar on 22 November at King’s College in London.

As part of a seminar and lecture series, Professor Julia Downing, Honorary Professor at  Makerere University and Chief Executive of the International Children’s Palliative Care Network will be speaking at the Cicely Saunders Institute on the topic: Understanding International Research on Children’s Palliative Care – The ICPCN experienceApproved by the Royal Colleges of Physicians for 1 CPD credit the series aim is to optimise opportunities for local, national and international networking within palliative care and rehabilitation. The Cicely Saunders Institute facilitates seminars to assist in improving practice, education and policy, and the integration of research and clinical endeavours.This lecture is free to attend.

The Speaker

Professor Downing is an experienced palliative care nurse, educationalist and researcher. She has been working within palliative care for 27 years, in the UK, Uganda, Africa, Eastern Europe and globally. She is the Chief Executive of the International Children’s Palliative Care Network, an Honorary Professor at Makerere University and a Visiting Professor at the University of Belgrade, along with several universities in the UK. She has a wide variety of experience in undertaking collaborative research in low and middle income countries and is also an Honorary Research Fellow at the Cicely Saunders Institute and the Chair of the UK Palliative Care Research Society.


There is an urgent need for more research in children’s palliative care. Whilst the amount and quality of research has increased over the past decade, the lack of evidence in the field is at risk of hampering developments. Palliative Care Network undertook a Delphi study to prioritise the global research agenda for children’s palliative care. Highlights from these studies will be discussed, along with the challenges and lessons learnt in undertaking collaborative international research in children’s palliative care.


The lecture will take place at the Dinwoodie Lecture Theatre, The Cicely Saunders Institute, King’s College, Bessemer Road, London. SE5 9PJ.

To learn more, you can contact the Cicely Saunders Institute on 0207 848 5357 or email email hidden; JavaScript is required

Download the flyer: Seminar Flyer Julia D November 2017

ICPCN Training of Trainers course held in Czech Republic

Participants show off their certificates at the end of the course. As a token of gratitude, the trainers were all presented with a book on the city of Prague and a pink pig, which is the mascot of the Czech Working Group for CPC.

Last week, ICPCN provided a week-long Training of Trainers (ToT) Course in Prague, in the Czech Republic.

Following on from an introductory course on children’s palliative care held in the capital city in June and a more advanced course in September, a group of 10 medical professionals were trained to help them become proficient  trainers in children’s’ palliative care through the entire country.

Financial support for the training was provided by Česká společnost paliativní medicíny with technical and educational support from ICPCN. An outcome of the original training has been the development of a Working group for Children’s Palliative care (Pracovní skupina pro dĕtskov paliativní pécí) under the strong leadership of Dr Mahulena Mojžíšová.

The enthusiastic group of ten participants, which included medical doctors, a researcher, two paediatric nurses and a special needs teacher, were provided with a theoretical basis on education for adults as well as pointers on good presentation skills. Topics covered by the trainers, Dr Mike Miller, Maraliza de Haan and Sue Boucher included:

  • Role of a facilitator
  • Group dynamics
  • Leadership and teamwork in the classroom
  • Emotional literacy
  •  Co-ordination and planning of training
  • Conducting a needs assessment
  • Coaching
  • Good communication skills
  • Effective presenting
  • Characteristics of adult learners
  • How we learn
  • Self-directed learning
  • Teaching styles / modes
  • Using case studies and experiences in training
  • The teaching and training cycle
  • Curriculum design and lesson planning
  • Assessment and evaluation

On the final two days of the training, participants were each asked to give a 45 minute presentation on a topic related to children’s palliative care after which they were given constructive feedback from the trainers and their peers on their presentation skills, the logical and natural flow of their presentation and content, their awareness of group dynamics, their use of teaching modes and dealing with challenging questions and behaviour.

Course participants expressed their satisfaction with and appreciation for the training, particularly as they are in the process of planning an Introduction to Children’s Palliative Care course for health professionals in the Czech Republic. The ICPCN is committed to continue to assist with the development of this course as well as to add e-learning courses in Czech to the ICPCN e-learning website.

All the training sessions were also attended by Prase, a toy pink pig, which has been adopted by the Working Group as their mascot.

Key healthcare workers in Swaziland trained on early warning signs of childhood cancer

Dr Gita Naidu trained 32 doctors and nurses from all four regions of Swaziland on the Early Warning Signs of Cancer in Children.

Denise Mortlock of The Rockinghorse Project, a children’s palliative care service in Swaziland, writes of training of health care professionals on the Early Warning Signs of Cancer in Children

One of the many benefits of being a member of the International Children’s Palliative Care Network (ICPCN) is having access to their excellent resources and contacts. This was especially the case when ICPCN introduced The Rocking Horse Project (RHP) in Swaziland to CHOC Childhood Cancer Foundation South Africa.

Having had five children with cancer – three of them with retinoblastoma – referred to RHP for end of life care within seven weeks, RHP needed to take some action to alleviate this suffering.

As there is no treatment available for children in Swaziland diagnosed with cancer, these children are sent to Chris Hani Baragwanath Hospital in South Africa where they are cared for by CHOC. Apart from the huge financial implications for the government, is the trauma experienced by the child and their family being sent so far from home to a totally different environment.

Too late for effective treatment

The medical staff at Baragwanath are reporting that in many cases these children arrive too late for effective treatment and are either being sent back to Swaziland for end of life care or they die on the ward.

CHOC, through the Ministry of Health in Swaziland and facilitated by RHP, arranged for training on the Early Warning Signs of Childhood Cancer. This training was held from the 2nd to the 6th of October and mostly funded by a very generous donor who had tried in vain to get treatment for one of the children with advanced retinoblastoma.

169 rural health motivators were trained on the early warning signs of cancer in children.

Dr Gita Naidu, the Head Paediatric Oncologist at Baragwanath Hospital trained 32 doctors and nurses from all four regions of Swaziland and the national trainers from CHOC trained 169 rural health motivators.

Dr Naidu and the Programme Manager from CHOC as well as the Healthshare Case Manager for Swaziland also met senior members in the Ministry of Health to find a way of accelerating the process for children with cancer to receive treatment in South Africa. Many children also do not have the correct documentation to cross the border, which adds to the delay.

Following the training, Dr Naidu asked to visit the Mbabane Government Hospital Children’s Ward where she came across a little girl who had that day been admitted with a suspected stomach tumour. After examining her, Dr Naidu instructed the family to get her to her clinic at Baragwanath as soon as possible. Fortunately this child is a South African who had come to visit her grandmother in Swaziland. The next evening the mother phoned to say that that the child had arrived in Johannesburg. The following morning they were seen by Dr Naidu at Baragwanath where a CT scan was done and a biopsy scheduled.

Prompt action is needed

Prompt action such as this is what is needed to increase the survival rate of our children with cancer. Currently a third of the children in the paediatric oncology ward at Baragwanath are from Swaziland. Our population is a mere 1,1 million compared to an estimated 56 million in South Africa which means that a great deal of work in this field needs to be done and done urgently.

Given the number of people from all the medical disciplines who attended the training, awareness of cancer in children and the urgency of referrals will now take place and a more positive report from the staff of Baragwanath will be received after a three month review.

Although we could not save the life of the child with retinoblastoma, through his death the lives of many more children will be saved.

Official launch of children’s palliative care programme in Lesotho

On Friday 13 October a ceremony was held at the Pitso Ground in Maseru to celebrate the launch of children’s palliative care provision in the  mountain kingdom of Lesotho.

Prompted by the unnecessary suffering of children with life limiting and life threatening illnesses, the government of this country sought help to provide relief for this most vulnerable of populations.

In September 2016, the ICPCN and the Lesotho Ministry of Health, agreed to work together. Meetings with stakeholders were held to raise awareness for the need for children’s palliative care services in the country. These were followed by the training of health workers in children’s palliative care and the development of a national curriculum and guidelines to guide the practice of health workers in implementation. After a year the project culminated with the launch of the Children’s Palliative Care programme in the country.

Official launch

At the official launch, attended by numerous Lesotho dignitaries, Dr Letsie, Director for Disease Control in the Lesotho Ministry of Health, stressed the importance of the availability for children’s pallaitive care services for children, particularly because they cannot clearly articulate their needs and levels of pain.

The deputy minister of health, Mrs Manthabiseng Phohleli, agreed with the theme of this year’s World Hospice Palliative Care Day.saying that palliative care is part of Universal Health Coverage (UHC) and those suffering, such as children and their families, should not be left behind.

She went on to say that, “children’s pallaitive care is special care that needs the cooperation of different ministries within the government and other stakeholders outside government.” She extended the gratitude of the Lesotho Ministry of Health to ICPCN for helping initiate such essential services in this country.

Health workers who completed the course in children’s palliative care, including a practical attachment in Bloemfontein, South Africa, were presented with certificates of attendance.

The choir from the Ministry of Health provided beautiful music which encouraged community members to test for TB and cervical cancer. A wonderful traditional dance was then performed by Basotho women including the trained health care workers.

Hats On

As this was Hats On for Children’s Palliative Care day, the audience celebrated the day by wearing their hats, most prominent being the Basotho traditional hat, known as ‘Mokorotlo’ in Basotho.

Busi Nkosi, who lead the project on behalf of the International Children’s Palliative Care Network (ICPCN) went on to say, “ICPCN would like to express our sincere gratitude to the Open Society Institute of Southern Africa (OSISA) for the provision of funds to carry out this important project in Lesotho. Our relationship with OSISA has allowed ICPCN to improve the health outcomes of children with life-limiting and life-threatening illnesses, not only in Lesotho but within other eastern and southern African countries.”