Julius Jones trust addresses emotional gaps in NHS support

In the wake of personal trials faced by families dealing with life-changing diagnoses within the National Health Service (NHS), the Julius Jones Trust has emerged; as a response to the emotional and psychological challenges facing families.

The trust was recently established by Brad Jones, Chair Trustee, and CEO; whose son, Julius, received a diagnosis of a rare brain tumour causing complex epilepsy.

The families journey began when Julius started having seizures last year, prompting a swift diagnosis of a rare brain tumour.

Their journey then involved grappling with the complexities of medical treatments and the profound toll it took on the family's mental health.

Brad Jones further emphasized the emotional weight of the experience, stating, "And although (the stress of Julius treatment) was only short term, long term, it really affected my mental health. Because of my mental health, I ignored all the signs of me being unwell."

That lead to a throat infection, becoming septic - Brad has less than two hour to live when he got emergency treatment.

"If I could help just one patient or parent not do the mistakes I did, I'd be really happy."

"So doing that is an almost like a therapy for me. You can feel like you've got PTSD from it all, but this is healing me so that I can live the best life and help others."

Their Mission

The Julius Jones Trust is propelled by a mission to become a recognized charity dedicated to supporting the NHS. Central to this mission is the fundraising initiative, Win Amazing, which allocates all profits to the NHS through the Julius Jones Trust. Brad Jones expressed the trust's focus, saying, "The support we aim to provide includes everything from new play areas and family support rooms to teams of therapists and family support workers."

Explaining the emotional toll on families, Brad's wife, Claire, highlighted the multifaceted stressors involved, from the operative risks to the family's uncertainty about the post-surgery outcomes for their child.

"The waiting to know if you're gonna be given surgery is one of the most stressful times."

"Families also need practical support. It might be something that seems really small, but it could be a practical issue that could really make a difference to that family."

Julius, the young patient at the center of this journey, is currently thriving after a successful surgery to remove a rare brain tumor. His father, Brad, happily shared, "The surgery was successful, and Julius has had no side effects. He's seizure-free and doing really well."

As the Trust gains traction, it envisions collaboration with various NHS Charitable Trusts to address the emotional, psychological, and practical needs of families facing life-changing diagnoses. The trust has already aligned with Addenbrookes Hospital, securing a partnership that includes the establishment of the Julius Ward—a dedicated space providing wrap-around care for families in the wake of a life-changing diagnosis.

For those interested in supporting the trust's cause, participation in the Win Amazing prize draw can be accessed through www.winamazing.co.uk.