Neve is my third of four daughters. She was a mischievous, loving, energetic child, often on the move. She loved her family, her friends, school and the park. A headstrong child, she knew her mind and what she liked. This included snacks and ice cream, climbing trees, cycling through the park, and swimming. Neve was a healthy child until the age of seven; in July 2020, she was diagnosed with an aggressive brain tumour. At the age of ten, Neve died, leaving a major absence in our lives.

Our experience of children’s palliative care began several months after Neve’s cancer diagnosis. Whilst she continued to receive chemotherapy, she had been referred to our local hospice for more support with her symptoms. Sadly, only a few weeks later, it became clear that the treatment was not working; her cancer was still growing. As a team, we were all in agreement; it was in Neve’s best interests to stop active cancer treatment. Our focus needed to be on making the most of the time she had left; embracing palliative care was the way to do this. Neve ended up living much longer than anticipated and her needs, medical and otherwise, became complex. Our lives became intertwined with the various forms of local palliative care support; this was our miracle. One of many.

Life with a seriously unwell child, her two older sisters, and one younger sister often felt chaotic and overwhelming. I had stopped working the day that Neve was diagnosed. Despite a supportive employer, financial reality meant that Neve’s father could not. Other than taking a couple of blocks of time off at key points, he continued to work for the rest of Neve’s life. For over two years, Neve needed round the clock care and support. This included medication needs, personal care needs, and complex symptoms, such as pain and seizures. Whilst it never felt like enough, the at-home support we had from carers and nurses became a lifeline for us all.

It was palliative care support that was at the heart of Neve’s care. Our initial referral was to our local hospice, Helen and Douglas House. Our introduction to palliative care was via their incredible outreach nurses. In time, we went on to have extensive support from the doctors, the care team, the sibling and family support teams and others within the hospice. Alongside this hospice care, we were supported at home by our local NHS children’s community nursing team and our local statutory social care team. As Neve’s needs grew, she was eventually awarded an NHS Continuing Care package, which was staffed by agency carers and nurses. These various teams collaborated to provide the palliative care that Neve needed. It doesn’t feel dramatic to say that they held us all up and together, as a family, over this time.

The impact of this support feels beyond words. It’s hard to explain the difference that palliative care provided, as I have nothing else to compare it to. It was clear from early on that Neve was going to die, no matter what we did. Palliative care helped us focus on realistic goals and hopes. These revolved around reducing and easing her suffering. By this point, Neve had significant medical trauma and was terrified of the hospital. Palliative care in the community meant we could keep Neve out of the hospital, despite her complexity. Returning to the hospital would only have compounded her suffering and sorrow and our own. 

 It’s clear to me that the financial costs of funding Neve’s palliative care will have been significant. However, the reality is that funding her care, in the absence of palliative care, would have been astronomical. Access to this palliative care will have saved the NHS, social care and the charitable section a vast amount.  

Despite the above, it would be misleading to ignore the aspects and services that were missing. These included medication pathways, peer support and education. Neve’s medication needs were extensive, complex, and challenging. It went far beyond the need to give her medication, which was complex enough. It took hours to source medications, have them prescribed, collect them and ensure we had the right stock levels. I was lucky to have the support of friends in doing this – I dread to think what it would have been like otherwise. A specialist paediatric palliative care pharmacy service or pathway would have made a difference. 

I yearned for structured and facilitated peer support, both before and after Neve’s death. Having seen the importance of peer support in the perinatal world, I knew this form of support was needed in the palliative care world. It would have been a huge help to me, emotionally and practically. 

Finally, education as a whole was not well integrated into Neve’s palliative care. We did have excellent support from health and social care, our local mainstream primary school and the local hospital school. However, because there was no fast-track source of education support and funding, Neve missed out on significant periods of education. Education provides so much more than just learning, particularly when children are so unwell. A bright and curious child can have palliative care needs and children with these palliative care needs can be as bright and curious as any other child. 

As mentioned at the beginning, whilst Neve’s story is firmly rooted in the UK, there is also an international context to our story. When I was young, living in the Yukon (Canada), in primary school, our school librarian’s young son was diagnosed with cancer. In time, he was supported by a nurse who had spent time at Helen House and brought palliative care knowledge and experience back to Canada. I suspect that this exposure to the idea of palliative care, in the context of his illness and death, was significant to me. I wonder whether it may have seeded an openness and curiosity to the importance of this type of care. 

With these connections in mind, it is clear how important it is to view palliative care through a global lens. We were lucky to live a mile away from the Helen House, the world’s first children’s hospice, when we needed their support. But most people won’t have this, even if their child also needs this support. Sharing the learning that years of palliative care experience and research has produced is vital. All children deserve the support and care that Neve received. But these learnings are not and should not be one way. There is so much to learn about how children are supported on a global level, even and perhaps especially when there is no formal palliative care and limited resources. We live in a diverse country and diverse world. We need to ensure that all children have access to palliative care that meets their own and their family’s needs, within the context of their culture and their life. 

Learning about the ICPCN helped me understand the importance of collaborating globally. I have watched Neve’s doctor work internationally, sharing her knowledge and bringing back new ideas and perspectives. These meaningful collaborations matter in a world where finances and resources are limited and needs are significant. 

As we come to the end of Neve’s story, I want to reiterate that palliative care is “just” good care for people who are suffering and/or dying. There will always be deaths – Neve’s cancer was not preventable and it was not treatable. Understanding this and accepting it meant that we could focus on what mattered. Our realistic hopes were for the rest of her life to be as good and as comfortable as it could be, full of laughter and love and care. 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. 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.  

Please take a moment to read Emily’s blog here.