Delivering Supportive Paediatric Palliative and End of Life Care

Carrie is a NHS Leadership Academy Graduate and Queens Nurse with a passion for improving community services for children, young people and their families. Carrie has previously worked as a Community based Case Manager and developed transition pathways for young people with long term conditions, disabilities, complex needs and life limiting conditions. Carrie worked with NHS England and was invited to speak at a shared learning event and the work of the team was referenced in an NHS Confederation Report ‘Children and young people’s health and well-being in changing times’ as an example of good practice. 

Employed by Hospice UK for a fixed term, Carrie lead a Transition Programme with the aspiration to further improve healthcare transition for young people with complex and life limiting conditions. Carrie was involved in developing a National Network and worked with colleagues on the joint revision of Together for Short Lives Stepping Up Pathway (published Feb 2023). Carrie presented at the Hospice UK National Conference twice and each time was joined by Young People sharing their own experiences. Carrie worked with Young Adults, an Artist and a Film Editor to record and document Lived Experience. 

Carrie now works for an Integrated Care Board as an Associate Designated Clinical Officer for SEND (0-25), where she continues to work alongside commissioners and stakeholders to ensure children and young people have the right health support to achieve the best outcomes.

Jess is a Paediatric Community Nursing specialist nurse, covering both Hounslow, North West London, and Richmond in South West London. Since joining the trust in 2016, Jess has worked alongside tertiary palliative care teams and local hospices to support families of children at the end of life.

From reviewing NICE guidance and recognising gaps, it was recognised the importance of children’s community nurses roles within advanced care plans and the importance of including families in these decisions. 

Louise is our Diana Children’s Nurse based in the Royal Aberdeen Children’s Hospital. 

Louise alongside our CHAS funded palliative care consultant supports families whose children have palliative care needs from the time of diagnosis to end of life. 

Louise trained as a General Nurse in Calderdale, West Yorkshire in 1991 before completing Children’s nursing registration in 1994 at Huddersfield University. She working in both Paediatric surgery and medicine before transferring to Bradford neonatal intensive care. Louise returned to Aberdeen in 2001, where she went on to manage the medical and oncology unit within RACH before joining CHAS as a Diana children’s nurse in 2019. 

Working in collaboration with the local health and social care partnership Louise provides specialist support in symptom management, complex decision making and anticipatory care planning as well as support at end of life. Louise provides ongoing supports to families after death ensuring appropriate bereavement supports are in place for our families locally. 

Louise works with RGU to deliver education in palliative care topics to nursing students. 

As part of the role Louise manages the CHAS at Home service offering at home support for children and families in the local area. This service has now been affiliated with RGU to provide a practice placement for future nurses. The service also provides a home support volunteer service giving families the practical supported needed when caring for a child with a palliative condition. 

“Since joining CHAS in 2019 I have felt privileged to have been given the opportunity to be part of a family’s journey however long or short that may be. To assist in helping them explore what is most important to them and make the small things count has allowed me to grow both personally and professionally. The power of a family’s selfless dedication when a child is approaching the end of life is the most incredible thing to witness”