‘Sick children require special nursing and sick children’s nurses require special training’ stated Catherine Jane Woods, Matron at Great Ormond Street Hospital, in 1888.
This statement was a legacy she left for those who fought for a single register for children’s nurses and a powerful legacy of how important it is to ensure that children’s nurses receive optimum training. My route into children’s nursing saw me train and register first, in the late 1980s, as an adult nurse. Having always known that I wanted to be a children’s nurse, I worked for 18 months on an adult ward before moving to a children’s neurology ward caring for children with a range of neurological conditions including some children with brain tumours. This sparked my interest in children’s cancer nursing and after training and registering as a children’s nurse, I spent several years at Great Ormond Street Hospital on a children’s oncology ward studying again, whilst there, to gain a qualification in children’s cancer nursing.
My years working at GOS were extremely rewarding and I learnt so much. Working as part of a wide multi-disciplinary team providing intensive treatment, symptom management and holistic care, I cared for many children for whom treatment is no longer an option or has failed and I became passionate about helping to improve the quality of life for the child and their family for the days, weeks, months or years before they die. Children’s palliative care became the focus of my career. Relocating from London to the Midlands, I spent 7 years working in the community; coordinating the care of children with complex care needs who are discharged home from hospital with a package of care; training the staff caring for them, supporting the families and managing a team of nurses and support workers. Most of these children had life limiting conditions and some were long term ventilated at home.
Being given the opportunity to set up a new hospice for children aged 0 to 5 years marked my move into children’s hospice care and working in a voluntary sector organisation. I then moved on to a hospice for children and young people aged 0 – 30 years as Director of Care where I was able to learn the importance of transition and working with adult sector colleagues to ensure that young people with life limiting conditions can transfer seamlessly from children’s to adult care. As a Director, I was part of the senior leadership team and I worked to develop a strategy of care and to shape the care workforce to meet the changing needs of children with complex and palliative care needs. I completed a Masters Degree in Medical Ethics and Palliative Care which has enhanced the care I provide to the children and families but also provided me with a deeper understanding of moral and ethical issues faced by health care professionals as well as those involved in healthcare management and policy.
Before joining Together for Short Lives in March 2022, I was teaching palliative care to pre and post registration nurses at university whilst also completing a Post Graduate teaching qualification. It was only in 2009 that nursing became an all-degree profession, meaning that all student nurses are now educated in universities in one of 4 fields of nursing practice (adult, children, mental health or learning disability). There is still a long way to go before palliative care is a core part of the nursing curricula however sharing my passion for and knowledge of palliative care nursing with the future nursing workforce was so important
In my new role as Head of Clinical programmes, I play a key role in the planning, development, delivery and evaluation of various project streams in children’s palliative care. Helping to shape the future vision for children’s palliative care in the UK, I lead the charity’s work to develop clinical programmes to support professionals and organisations and to help families.
Children’s palliative care nursing is an area which encompasses everything that I understand ‘real’ nursing to be; compassion, challenge, collaboration and commitment.Amanda
It has provided me with opportunities to work in hospitals, the community, higher education and in hospices and to work with, and learn from, so many inspiring children and families and from multi-disciplinary teams of professionals all focussed on improving the quality of life of children who require palliative care.
There are so many incredible people who are helping to drive the sector forward and it is a privilege to be involved in this. I still have to pinch myself every day to remind myself how lucky I am to be working in this area of children’s nursing and to be able to contribute to the ambition that every child and young person in the UK is able to access 24/7 quality palliative care. If this can be achieved before I retire, I will be extremely proud to have played a part in making it happen.