Neve was a healthy child until the age of seven, when she was diagnosed with an aggressive brain tumour in July 2020. She died at the age of ten.
Several months after her diagnosis, while still receiving chemotherapy, Neve was referred to Helen and Douglas House for additional support with her symptoms. Only a few weeks later, it became clear that treatment was not working and her cancer was still growing. The decision was made to stop active cancer treatment and focus on making the most of the time she had left.
Neve went on to live much longer than anticipated and her medical and care needs became increasingly complex. For more than two years, she required round-the-clock care and support, including medication management, personal care and support with symptoms such as pain and seizures.
Throughout this time, her family received support from Helen and Douglas House, their local NHS children’s community nursing team, statutory social care services and, later, an NHS Continuing Care package staffed by agency carers and nurses.
“It doesn’t feel dramatic to say that they held us all up and together, as a family, over this time,” her mother said.
While describing palliative care as being at the heart of Neve’s care, her mother also highlighted challenges around medication pathways, peer support and education for children with palliative care needs.
She also reflected on the importance of sharing learning and experience internationally, saying that learning about the International Children’s Palliative Care Network (ICPCN) helped her understand the importance of collaborating globally.
Reflecting on her daughter’s experience, she said: “Palliative care is not really an optional extra or something to negotiate – it is just good care. All children who need it should have access to this care.”
She added: “Once I understood that my child was going to die from her cancer, her palliative care referral was the best thing that could have happened.”
Read more about Emily and Neve’s story here.
Their experience also features in our new book Heart Strings and you can download your copy here.