What happens when hospice care is left to chance?

Hospice care should be there for every adult and child who needs it, and for their families. But where you live can affect whether you can access it, and with hospices under more pressure than ever, the care people rely on isn’t guaranteed. 

Here, we look at what that means for families like Jada-Lea's and for people like Frank and Michele. 

Jada-Lea is a music-loving teenager from Peterborough with a rare genetic condition, a duplication of chromosome 19. She loves bright lights, loud toys and watching clips of her dad, a former professional footballer. 

When she was born prematurely in 2009, her parents, Trevor and Michelle, were told her life expectancy was short, but the doctors didn’t know much about her condition. Since then, she has endured major operations, lengthy stays in hospital, and spells on life support. She’s unable to walk or talk, and is tube-fed. Despite all this though, she continues to defy the odds. 

“No one expected her to live this long, and she’s a very spirited and determined girl,” said Michelle. 

Caring for Jada-Lea has been difficult though, and at times it has taken its toll. 

“It’s been horrific at times, and we’ve been at breaking point.” 

Since late 2024, Jada-Lea has been supported by East Anglia’s Children’s Hospices (EACH), where she has short breaks and expert nursing care at its hospice in Milton. For Trevor and Michelle, it’s the only chance they get to have a break and switch off from being carers. 

“In terms of respite care, there’s nothing here, and it’s a gaping black hole. The only break we get is when Jada-Lea's at Milton,” said Trevor. 

“It’s peace of mind and a rare opportunity to recharge our batteries, ensuring we’re better equipped to deal with things when she’s back home.” 

Michelle added: “Life’s a pressure cooker until the moment we pull into the car park. Then I can feel myself relax, knowing she’s safe and in good hands.” 

For families like Jada-Lea's, whether that support is available can come down to where they live. Children’s hospices only receive around a third of the cost of their care from the government, so the rest relies on what local communities can raise. 

On average, government funding covers around 40% of the cost of care delivered by adult hospices. This average hides a wide range though, from some getting as little as 3% and others getting as much as 80%. 

Frank’s wife, Michele, was transferred to The Prince & Princess of Wales Hospice in February 2026, when her care moved to palliative care. Her pain hadn’t been properly controlled for more than three months, but within three days at the hospice, the team had it under control. And Frank, who had been her main carer, was able to step out of that role and focus on being her husband again. 

“In our time at The Prince & Princess of Wales Hospice, only one thing was painful. Michele’s passing. Everything else was living. Loving. Being.” 

After Michele died, Frank learned how the hospice was funded. 

“I was really surprised to learn that The Prince & Princess of Wales Hospice only receives around 25% of its funding from the National Health Service. 

“With everything they had given us, that stayed with me.” 

With rising costs, many hospices are having to cut back. In fact, nearly 6 in 10 have made or are considering cuts to frontline services, which means fewer beds and fewer visits.  

Already nearly 1 in 3 people who need palliative care miss out on the support they need. At the same time, demand for hospice care is only set to rise. Up to 90% of people who die could benefit from palliative care. 

Everyone deserves high-quality hospice care, whoever they are and wherever they live. Join us this Hospice Care Week to say: don’t leave hospice care to chance. Help it to be there, for all, for now, forever. 

Find out more about why hospice care is left to chance.