Despite the increasing regulation of children's hospices, they continue to offer nurses uniquely rewarding working environments and autonomous roles.
Autonomy at work is something most experienced nurses aspire to. Linda Foley, children's hospice nurse and education coordinator at Martin's House Children's Hospice in Yorkshire, believes it is a crucial and rewarding aspect of hospice work.
She recalls the case of a teenage girl whose family she supported following the girl's death. 'As I had gained the mother's trust, she felt comfortable asking me if she could spend more time with her daughter, here at Martin House, before we began the usual funeral procedures,' she says.
The nature of Ms Foley's job, which is in the voluntary sector, allowed her to carry this out with minimal bureaucracy. 'I was able to arrange this without asking for any permission and I was so glad to be able to do what was right for that mother, as I believe that accommodating the different needs of different families is at the core of what we do.'
Ms Foley, who describes her job as a 'privilege', joined Martin House care team 11 years ago, having previously been a ward sister at Leeds General Infirmary. Although not trained in paediatrics, she has had general and psychiatric training - and has always been interested in the impact of illness on families.
Given her passion for helping sick children, Martin House was a natural choice for her and seven years ago she was appointed education coordinator. She now develops staff training, oversees induction programmes and forges links with outside professionals. However, she points out that children's hospices have flat structures, and all team members go beyond the boundaries of their roles, supporting each other as needed. This means the work is always varied - which Ms Foley considers another bonus.
'In one day I can be cooking lunch, checking medications then going bowling. People imagine that children's hospices are sad places, but this is a very happy, family environment most of the time. No one wears a uniform and we all eat our meals together,' she explains.
'The children here like to play and have fun, just like all other children. Another misconception is that most children in hospices have cancer, but many suffer from metabolic or neuromuscular degenerative diseases. Everyone here has a paediatric condition, but some are now living into their mid-20s and beyond.'
The hospice has two houses: Martin House, for young children and families; and Whitby Lodge, for teenagers and young adults.
Children's hospices have had to contend with a range of new inspection policies in recent years but, despite the additional work, new processes have highlighted areas for improvement and helped to maintain the highest standards of family care.
The largest policy change recently was the Care Standards Act 2000, which created a regulatory framework for all social care and independent health care services. Children's hospices are now inspected by the Healthcare Commission, falling under the independent hospitals core standards, the hospice core standards and the children's hospice standards.
More recently, National Standards, Local Action and Standards for Better Health, both published by the Department of Health in 2004, have changed inspection methods.
'It has been challenging for us to understand the new inspection processes. There is concern that the more time we have to spend on providing evidence that we are doing a good job, the less time is spent with the children,' says Ms Foley. 'But we had a very positive assessment and, on the plus side, we've been able to really focus on all the elements that enable us to provide the best possible service.'
Many nurses at Martin House are trained in paediatrics, but some only have general training.
'Nurses are attracted to children's hospices because they like being able to do what they were trained to do - hands-on care. We provide holistic family centre care and we usually retain staff for many years,' she says.
'We also employ younger nurses. We take students on training placements from surrounding areas, and some want to join our team once they qualify. I usually recommend, however, that they spend at least two or three years within the NHS first.'
The Children's Hospice Association says there is a shortage of sick children's nurses - partly due to a lack of dedicated training. Some hospices run courses, such as bereavement and sibling support, and national conferences can be helpful. Nurses with learning disability skills and those with good communication and listening skills may have the qualities needed.
Qualifications are important, but the right personality is critical. Ms Foley says: 'We conduct a very thorough interview because the person must have a solid understanding and awareness of what the families go through - and have the quality to be able to be alongside children, young people and their families.
'You have to be flexible - both in your views and what you are willing to do. The people who find this job the most rewarding are those who are truly dedicated to supporting the families.'
How do I become a children's hospice nurse?
THIS COULD BE FOR YOU IF: you are interested in supporting bereaved families and are used to working in an environment with children.
YOU NEED TO BE GOOD AT: communicating and listening. A sense of humour is essential.
YOU NEED TO HAVE: experience of and/or training in working with children.
YOU DON'T NEED TO HAVE: a thorough knowledge and understanding of the rare and life-threatening conditions affecting sick children.
OTHER SIMILAR JOBS YOU COULD CONSIDER: community nursing, paediatric oncology, or looking after children with chronic illnesses on general paediatric wards.
WHERE TO FIND MORE INFORMATION: The Association of Children's Hospices; the Association for Children with Life-Threatening or Terminal Conditions and their Families (ACT); and the RCN Paediatric Palliative Care subgroup.