My job: palliative care children's nurse
Nurses who provide children's palliative care in the voluntary sector explain why their roles offer not only job satisfaction, but considerable career development opportunities.
The number of children and young people living with a life-limiting or life-threatening condition is rising, but there is a shortage of qualified nurses providing children’s palliative care in the voluntary sector.
The charity Together for Short Lives has launched a campaign to encourage nurses to consider a role in this sector to prevent any further reduction in services for this already vulnerable group.
Workforce and development manager Gillian Dickson says: ‘Our You Can Be That Nurse campaign is about shining a light on the wonderful opportunity a nursing career in this sector can bring.
‘The varied nature of the role and the opportunity to provide holistic care to the child and their family make this one of the most rewarding roles in nursing.’
Staff nurse Julie Webber agrees. A year ago she joined Rachel House Children’s Hospice in Kinross, where she cares for children who have a palliative diagnosis, and their families. Part of the role is providing end of life care.
After qualifying in 2002, she worked in ENT/neurology at Glasgow’s children’s hospital, before moving to the psychiatric intensive care unit at the Royal Hospital for Sick Children in Edinburgh, and later a children’s development centre in Fife.
‘The only challenges in my role are having the correct knowledge and experience around caring for a child at their end of life,’ says Ms Webber. ‘And there are so many rewards.
‘I enjoy working closely with and getting to know the children and their families. It is lovely to be able to offer the children choices, engage with their wishes and enable them to make memories.
The post is Ms Webber’s first outside the NHS. She says she has found it a more supportive environment, adding that the team works closely together.
She has taken part in in-house professional development opportunities, covering end of life symptoms and care and spirituality, and has also attended an external respiratory study day.
Staff have access to clinical supervision sessions, a competency framework and leadership opportunities.
‘The role has improved my nursing practice,’ she says. ‘My clinical skills such as PEG feeding, medicine administration and seizure management have improved, as well as my communication and listening skills, allowing me to be more empathetic.
‘I’m involved in decision-making processes and I am a more autonomous practitioner as a result.’
Clinical nurse specialist in palliative care Lynne de Melo has also found that joining the sector has helped her career develop.
She joined Rainbows Hospice for Children & Young People in Loughborough, Leicestershire, in 2000, and took up her current role in 2007.
‘My supportive managers actively encourage attendance at study days and conferences, and I have completed a postgraduate diploma in paediatric palliative care and a course in advanced communication skills,’ Ms de Melo says.
‘I have the luxury of being able to spend more time working directly with families and children, and have learned so much from them.’
She works with, teaches and supports the team, helping with symptom control or end of life care, and ensuring each family gets the care they need.
‘For me the main challenge of the role is trying to change perceptions, particularly those of other professionals,’ she says. 'We can enhance the care they are giving to families.
‘Choice for families in where their child is cared for is an important part of palliative care. Hospices are bright, positive places, and can have an important impact on a child’s quality of life.
‘We are able to work far more flexibly to meet families’ needs than if we were part of the NHS.
‘We can use our staff creatively, and often care for siblings for short periods to enable parents to be with their sick child, or allocate more staff to enable a child to go out on a trip.’
Making a difference
The reward, she says, is ‘truly making a difference to families facing every parent’s worst nightmare’.
Both nurses see the role as positive, rather than emotionally difficult. ‘It is a supportive specialty, with access to peer help and supervision,’ says Ms de Melo.
Ms Webber agrees. ‘There is help and support to overcome any initial difficulties. It’s been a good move for me. I love coming to work every day.’
About the sector
- There are more than 50,000 children and young people in the UK who are expected to have short lives, and the number is rising.
- Two thirds of voluntary services surveyed by UK charity Together for Short Lives reported that a shortage in nurses is resulting in a reduced care offering, for example, due to bed closures and reduced respite.
- The nurse vacancy rate in the children’s palliative care voluntary sector is currently 10%, higher than the NHS nurse vacancy rate of 7%.