As the BBC drama ‘Best Interests’ continues, we explore the experiences of the character Katie – sister to Marnie, who has a life-limiting illness – and the kind of tailored support Demelza offers to siblings who may be in similar situations. o our families, from first diagnosis and for as long as we are needed.
“You okay?” asks Andrew.
“Are you okay?” responds Katie.
“I asked first.”
“I actually meant it.”
A rare quiet moment between father and daughter by the hospital vending machine as they wait for more news. Marnie, Andrew’s daughter and Katie’s sister, has been rushed to hospital after developing a life-threatening infection. It’s a small moment in the BBC drama, ‘Best Interests’, but is indicative of a deeper issue.
Family dynamics can shift drastically when a child becomes unwell with a serious or life-limiting condition and their sibling might adapt their own behaviour to accommodate these new circumstances. We can see how Katie in ‘Best Interests’ tries to shrink her own feelings and take up as little space as possible, to reduce the strain on her parents; she never quite answers a question about her own wellbeing, always shifting the focus back to her parents or her sister.
She clearly feels the need to care for Marnie too; in one flashback scene, she hands over her own stuffed toy – a small dog, also called Katie – to baby Marnie and tells her she can keep it. Despite her best intentions, and her desire to help Marnie live her best life, it seems Katie often forgets that she is a child as well – and needs the same kind of emotional support she is so quick to offer to her family. This may well be an experience many can relate to: according to siblings charity Sibs, there are over half a million children and at least 1.7 million adults in the UK who have grown up with a disabled brother or sister.
Holli, mum to Albert and Wilfred, shared her own worries about Wilfred before being referred to Demelza:
“Albert has Batten’s Disease; a life-limiting neurological condition which causes seizures, blindness, and over time takes away a child’s ability to move or speak independently. For his little brother Wilfred, it isn’t so strange because it’s all he knows… he knows some of the basics of what to do if Albert has a seizure, and he can even tell me the readings on Albert’s machines, if I ask him to. I do worry sometimes that more of the focus is on Albert, because it has to be, but Wilfred doesn’t complain.”
Demelza offers support for the whole family and since being referred, Holli and Wilfred have been able to spend more time together with the assurance of expert care for Albert. It might be having a Demelza nurse to look after Albert while Holli takes Wilfred to school, or an opportunity for Wilfred to take part in plaster hand-casting alongside Albert so they have memories to look back on together, but the time they have together because of Demelza is all the more precious because it considers and includes Wilfred from the outset.
Besides their relationship with their parents, there’s also the impact on the child’s own emotional wellbeing when their sibling is diagnosed. It can bring a host of conflicting and confusing emotions to the forefront for their sibling or siblings; they can become anxious, scared, guilty, and even jealous. These emotions, when handled correctly and given an outlet, are not only natural but healthy – especially when they know they’re not alone.
To this end, Demelza provides the siblings we support with opportunities to socialise together, both at our three sites in Kent, South East London, and East Sussex, and off-site on outings and trips to places like Gravity trampoline park. Others, like our popular yearly sibling residential trips, are specifically designed to build confidence and resilience in children and young people, as they face new challenges – many needing teamwork and problem-solving to overcome and offering the chance to lend words of support and encouragement to one another along the way.
Willow, sister to Jamie, attended one of these trips last year and her mum Judith recounted how proud she was of Willow for staying away from home for the first time. “These events are crucial for our kids to be with others who just get it”, Judith says. “The zipline was my favourite part,” added Willow, “it was so much fun.”
Demelza treats each child as an individuals, considering their relationship as siblings without defining them by it. Even in cases where the worst happens – like for Edward, who lost his brother Henry to acute myeloid leukaemia in 2022 – Demelza will still be there to support them.
Sam, mum to Henry and Edward, shares, “Edward was looked after as well; he had one-on-one music and art therapy sessions at the hospice in the days after Henry’s death, helping him to process the complicated emotions he was being faced with. The care didn’t stop after we left Demelza, and he has continued to have art therapy sessions at school with Demelza’s art therapist Rachel, giving him a safe space to express whatever he might be feeling.”