Bringing health teams together to ensure the best end of life care for children at home

Josie’s story

Josie,  through a single-minded focus on optimal care for her patients, brought together professionals from different agencies to work together as never before to provide better care for children and their families at the end of life.

Josie trained and worked for many years as a staff nurse in Southampton. Four years ago, she applied for and got a job that has led to what is undoubtedly her most impactful work. Determined to have the greatest possible positive influence on the lives of children and their families in East Dorset, Josie dedicated herself to maximising the efforts of all agencies and more importantly, all individuals involved in that care. In doing so, she even surprised herself.

Part of Josie’s role is Lead for Children’s End of Life. Whilst the care she had witnessed was good, she was convinced it could be even better if everyone’s efforts were coordinated.

And so The Starfish Team was born – but not without some perseverance and a few ups and downs. Josie was determined that her goal of collaborative working resulted in the best care for the children and so she ensured it continued. The team comprised of a local trust and the local hospice.

“It’s all about end of life and palliative care: about training, support and companionship and giving the child holistic care in such a way that we all know the role we’re playing, rather than just turning up in a child’s home not knowing each other or what we’re meant to be doing. It’s made things seamless.”

Josie understands the needs for a shared approach and has never let the potential politics of care settings and resources stand in the way of collaboration. She actively promotes seamless working and support of both the NHS and Julia’s House Children’s Hospice equally. This is very humbling and results in families receiving the very best from a variety of services.

Josie, through a single-minded focus on optimal care for her patients, brought together professionals from different agencies to work with one another as never before to provide better care for children and their families at the end of life.

What drives you to make a difference?

Josie remembers the attitudes of some when she started bringing people together for meetings from different organisations. “Everyone seemed to be in competition with each other. But, in truth, this is not the best way to give seamless care.”

Josie had some obstacles to overcome when orchestrating such a collaborative approach, but it was all worth it in the end. Most important of all, Josie says, has been the effect on the children and their families. “In East Dorset we’ve quite a few cases and while it has been tough, with everyone now working together as a team, we’ve managed to give children and families the best compassionate care and support at their difficult time.”

The beauty of the model Josie has pioneered in Dorset is that it there is no financial cost attached, so it can be replicated anywhere.

How do you inspire nurses to feel at ease with palliative care? 

Josie is modest about her achievements, stressing that the Starfish Team is exactly that: a team. Where she is prepared to take some credit, is in the professional development of some of her nursing colleagues.

“I have managed to bring on some of the community nurses that were definitely frightened of end of life. By teaching them step-by-step, I’ve helped to reduce the fear around providing palliative care, and they are not frightened any more. It’s about giving them the empathy, support, skills and teaching they need and not being judgemental. That, I feel, is my impact.”

While reluctant to be singled out for praise, Josie does acknowledge the success of the project and would like to see it replicated.

“It’s definitely not perfect here but I do think we are getting there. I’m not sure that everywhere in England has a similar level of collaboration. I think there needs to be more integration between hospitals and hospices.”

What are your hopes for nursing?

Josie firmly believes that the role of community nurses is underestimated.

“I think we need to have more recognition for the highly skilled and wide ranging clinical expertise the community team have in end of life care. This can be seen in the support they give to families and children with extremely complex needs, ensuring they keep closer to home.”

When talking to her fellow professionals, whether as part of the Starfish Team or with her own colleagues, Josie always stresses where the focus of attention should be:

“I just say, you’ve got to remember the children. It’s about nothing else apart from them and their family. And because I am a can-do person, if there’s something they want, I’ll always see if we can do it. If it’s in their best interest and provides the best outcome, we have to get on and achieve it. Sometimes that means we have to challenge things.”

Josie Roberts
Dorset, United Kingdom
Dorset United Kingdom