“Is it something we could have noticed earlier?” Nicci is clearly exhausted but asks the question that has been eating at her with desperation.
Nicci is handed a coffee as she and her husband Andrew sit down on the sofa, surrounded by medical professionals. Their daughter, Marnie, lies unconscious and intubated in a room nearby. The doctor reassures them no, they are excellent parents. There is nothing more they could have done.
Although parents Nicci and Andrew are fictional in the BBC drama ‘Best Interests’, the feelings of guilt, anger, and fear portrayed are very real for many families caring for a child with a serious or life-limiting illness. Significant decisions are frequently required and the emotional pressures families face are huge.
Lisa, mum to Oakley, shares her experience of how isolating and frightening it was navigating her son’s initial diagnosis of a serious illness:
“In a moment your whole world can be turned upside down. This is what happened when our two-year-old son Oakley was diagnosed with Angelman syndrome; a complex genetic disorder that primarily affects the nervous system. Oakley was poorly with viruses every couple of weeks and we were in and out of hospital because of frequent seizures. We were given little support and it was frightening."
The emotional strain that families face can also be very isolating. A national survey by Together for Short Lives (2018) of families caring for children with a serious or life-limiting condition found that 84% of families had felt isolated since their child’s diagnosis and that 90% had felt that their relationships, social life and interactions had been adversely impacted too.
Demelza is able to offer expert clinical, emotional and practical support to families at every step of their journey, as well as offering opportunities for families to come together, meet other people who are in similar situations and understand the challenges they face.
Lisa says: “Receiving a diagnosis like Oakley’s can happen to anyone at any time and you can feel very alone, helpless and trapped at times. But Demelza helps you keep going when sometimes it feels so hard to. You learn to take each day as it comes, enjoy the small joys in life and you learn to really appreciate what support you can receive.”
‘Best Interests’ is based around the unfolding conflict between Marnie’s mother, Nicci, who wants treatments to continue Marnie’s life and the medical professionals who recommend a transition to palliative care for her quality of life. However, it is unusual to see such conflict in real cases, as Helen Rolls, Lead Nurse at Demelza, explains.
"We regularly deal with cases where we have to think about what to do if a child becomes poorly again, but it's very rare that the professionals and parents don't agree.”
Demelza works with the family to support them in having difficult conversations and planning for different routes and each eventuality for their child.
"It’s so important to keep communication open with families", Helen says.
Demelza also has a team of experienced counsellors, therapists, and family support staff who are experts in supporting families to navigate and process often deeply complex and difficult emotions.
“When we were referred to Demelza, I remember thinking: ‘Thank goodness’. Finally, we were getting some help. I was exhausted, Ethan was exhausted. Demelza has held our hand and supported us for years - having a nurse or health care assistant to talk to and share the journey with us has been invaluable,” says Harriet, mum to Ethan.
Demelza has also recently rebranded, removing the word ‘hospice’ from our name to be more welcoming to families who could benefit from our wide range of services.
“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”.