We are returning once again to the report published this year – Palliative Care – Celebrating Nurses Contributions. Today, we are highlighting the work of Lyn Gould. Lyn features in the chapter on Service Development.
After nearly 40 year’s experience in the National health service ((NHS), in England as a nurse, manager and leader, Lyn, and her husband Alan, founded Butterfly Children’s Hospices (BCH) and moved to China to pioneer children’s palliative care services.
Lyn has just retired as CEO and Chair of BCH and is Vice Chair of the International Children’s Palliative Care Network (ICPCN), a speaker on children’s palliative care at international conferences and events and is passionate about sharing her expertise in the development of children’s palliative care services in low-and-middle-income countries (LMICs).
In 2017 she was awarded an MBE (Member of the Most Excellent Order of the British Empire) for her services to the provision of palliative care to children in China. From the start, the goal of BCH was to develop palliative care services for children with families but in 2006 there was no understanding of children’s palliative care and government priorities were to rebuild infrastructure such as roads, rail and businesses. So they decided to open a hospice facility to care for life limited abandoned children in the orphanage, in order to: demonstrate the concept and benefits of simple palliative care, work within the government system to get the concept and BCH introduced to government, develop a model which could be replicated across the system and establish BCH as a reputable organisation with high standards.
10 years on and China has developed significantly. There are fewer children abandoned and health and social carers are recognising the need for children’s palliative care. The hospital system is improving and BCH is now established as a leader in children’s palliative care in China and facilitating work with paediatric oncologists to educate and develop appropriate services, linking with community hospitals to provide end-of-life care for children and their families. BCH has supported the development of on-line support through social media, family support groups and one-to-one calls with families for advice and delivery of practical nursing in the homes. Education and research is integrated into each project, testing theory, learning and developing appropriate services. BCH has held 4 national conferences, provided speakers and held workshops at national conferences, published articles, given hundreds of interviews in the media and provided education through courses, media and one off events.
There have been many challenges along the way, including a lack of understanding and suspicion of the concept of children’s palliative care in society; a lack of statistics and research; lack of medicines including strong analgesics; and a lack of funding for caring for a dying child, with hospitals focused on cure. Nurses still struggle for professional status in Chinese culture, hampering understanding and development of multi-disciplinary care for children’s palliative care services. Lyn has always been passionate about nursing as a profession and is delighted to have been able to contribute to the development of nursing in China. Caring for children with palliative care needs, training nurses and carers to care for them and understand the uniqueness/value of what is often seen as a worthless and cursed life, has been the most rewarding thing she has done in her long career as a nurse. The majority of children she has cared for have been nonverbal and she says that to be able to provide care that enables a child to smile and enjoy life is a privilege.
Being an influencer in a culture that is not her own has shown her what is possible and demonstrates the value of every human life.
You can access the full report, Palliative Care, Celebrating Nurses Contributions here.