Challenging the stigma around children's hospices

When you think of stories featuring a child with a serious or life-limiting condition, there are not many examples. You might perhaps think of Beth March in Little Women, or Tiny Tim from A Christmas Carol. These are both over 150 years old and are indicative of a pervasive squeamishness of our society to discuss or even think about the very real situation that many families face in coping with such a diagnosis.

The BBC drama, Best Interests, has received national attention from viewers and the media in portraying the fictional story of Nicci and Andrew – parents facing the impossible choice of whether to fight to continue their daughter Marnie’s life or transition to palliative care for her quality of life.

The writer and production team worked with the staff of a real paediatric intensive care unit, and the show has approached this incredibly difficult subject with compassion.

In a Q&A session, writer Jack Thorne expressed his concerns when first contemplating a drama on this subject, saying that he did not want to write a story of “Non-disabled people reacting to disability,” nor a ‘parents vs. the NHS’ divide. The conflict being represented between parents Nicci and Andrew, as well as the frequent flashbacks of day-to-day life as a family together with both daughters Marnie and Katie, humanises a circumstance that is often otherwise shied away from.

In a national survey in 2018, Together for Short Lives found that over one in three individuals would not feel comfortable talking to a friend about their child who had been diagnosed with a life-limiting or life-threatening illness. Indeed, most members of the Demelza team have at some point been told, “I don’t know how you can work there, it must be so sad.”

Yet to witness Demelza in action is to see children and parents relaxing and enjoying being together as a family. Passion and compassion in every action and interaction. Moments of joy and a sense of belonging. Demelza aims to create the most supportive, warm and welcoming environment that children with serious or life-limiting conditions and their families could wish for.

Best Interests has been significant in terms of raising awareness of children’s palliative care and some of the complex practical and emotional support needed by families who find themselves in similar situations to Nicci and Andrew, but does not include children’s hospice care at all. It is disappointing and reflective of how far we have to go in representing children’s hospice care in the public domain and in tackling this pervasive discomfort.

As part of our recent rebrand, Demelza has removed ‘hospice’ from our name to address the immense barrier that the stigma this word presents. We know that there are many families who could benefit from our wide range of services, but who feel that accepting hospice care is ‘giving up’ on their child.

“The connotation of the word ‘hospice’ was frightening, I was angry, couldn’t acknowledge the situation we were in as a family and didn’t want to be there…” Sam, mother of Lucy who has a unique genetic condition, explains how she felt originally when first approached about using Demelza’s services.

However, the family quickly came to rely on the variety of support Demelza offered: “I’m not sure where we’d be without Demelza’s services,” says Sam. “Demelza saved our family, we are so grateful for the help”.

Whilst we hope that our new brand will help us to reach more families who could benefit from our services, we also look forward to the day that the word ‘hospice’ no longer poses a barrier. Best Interests is a conversation starter and goes a long way in bringing home some of the realities of families like Andrew and Nicci, but we urgently need accurate and educated representation in the public eye to tackle the ongoing taboo of children’s hospice care and the tragic impact this taboo has.