Advocacy is essential for seriously ill children, says Bristol charity

A recent NHS report* identifies the worrying gaps in patient advocacy, especially in complex medical situations such as end-of-life care planning.

One study highlights that patients’ voices are sometimes overshadowed in care discussions, which can affect their understanding and involvement in treatment choices. This underscores the critical need for advocacy in healthcare, especially for patients and families navigating intricate medical decisions.  

Dr Rageshri Dhairyawan would agree. In her new book, Unheard: The Medical Practice of Silencing, she says, “The healthcare systems we work in are designed in a way that actively discourages listening.  Doctors and patients lose some of their humanity in these conditions, leaving both feeling unheard.” 

If that’s the view of both the NHS and a well-qualified medical professional as a direct result of her own experiences, imagine how difficult life is for parents of non-verbal children with complex, and sometime life-limiting, conditions! 

“Having a child with a very serious illness is frightening enough. Trying to interpret your child’s wants and needs in a medical setting when everything is happening very fast around you, and you are stressed beyond belief is something else,” says Emma Headings, a Bristol based mother of two. When her daughter Izzy was born, the medical team attending her birth offered Emma and her partner Neil the option of end-of-life care for their baby. 

But Izzy was a fighter – and so were Emma and Neil. In her eight years of life, Izzy has been cared for by the qualified nurses at children’s hospice at home, Jessie May, and a big part of Jessie May’s support is advocacy for the child. 

“The Jessie May nurses can advocate for Izzy’s needs because they know her, they know what is and isn’t ‘normal’ for her.” Emma explains. “With Jessie May, there’s a consistency with the nursing care, whereas in hospital, especially in an emergency, you rarely see the same person twice. That makes a real difference.” 

"Beyond our expert medical care, we make sure the children's and families voice is at the centre of everything we do” says Jessie May lead nurse Steve Wiltshire, who has looked after Izzy since she was a baby. 

For families who require advocates to help articulate and interpret their children’s needs, Dr Dhairyawan’s book is especially pertinent. Her work emphasises the importance of care models that prioritise active listening and advocacy, reinforcing the necessity of compassionate, patient-centred care. 

“Even if a child is non verbal, they still have plenty to say,” says Jessie May nurse Charlotte Baker. “Our advocacy isn’t just about speaking up; it’s about listening deeply and bringing forward each child’s unique needs and wishes. For families, this means support that goes beyond care routines - helping them navigate complex choices, manage emotions, and find reassurance in moments of uncertainty. We make sure every child’s comfort and dignity are upheld, giving families peace in knowing they’re never alone.” 

In contrast to the gaps frequently found in standard healthcare, Jessie May nurses take a proactive approach, working closely with families to provide support that extends beyond clinical care. They empower families to make informed choices, advocate for personalised care, and serve as trusted allies in challenging circumstances, such as end-of-life planning or long-term treatment navigation. This advocacy ensures that families feel engaged, respected, and integral to every decision regarding their child's well-being.  

With a Jessie May nurse, comprehensive medical care and essential advocacy for children like Izzy come as standard. This invaluable support transforms the experience for families, ensuring that no one feels alone in their healthcare journey.  

“The importance of advocacy can’t be overestimated,” says Jessie May CEO Daniel Cheesman. “And it’s especially ironic that best practice is offered by the charity sector, which lies largely outside the statutory funding of the NHS. Less than 20% of our funding is statutory – the rest is the result of the generosity of the general population. And for children like Izzy, that generosity really does save lives.” 

This year, Izzy and her mother Emma are at the heart of Jessie May's annual winter appeal. To find out more about how Jessie May nurses advocate for Izzy's needs, and to learn how your support can help, read the full story here Winter Appeal - Jessie May.