I was told my son had a life-limiting condition over a video call.

In that moment, everything changed.

There was no preparation. No support. No one physically there to help us process what we were being told. Just a screen — and words no parent is ever ready to hear.

While medical professionals may use the term “life-limiting”, what parents hear in that moment is that their child’s life may be shorter. That their future has changed forever. That the life they imagined for their child is no longer certain.

No parent should have to receive news like this over a video call.

And what followed made it even harder.

After that call, we were left for weeks without meaningful support. We were trying to process devastating information while also having to fight to be listened to — raising concerns, asking questions, and struggling to navigate a system that did not feel accessible or responsive.

This experience is not unique.

Across the UK, families are:

• Raising early concerns and not being taken seriously
• Experiencing delays in diagnosis or communication
• Receiving life-changing news without appropriate support
• Left to navigate complex systems alone at one of the most vulnerable times in their lives

This is not just about one family.

This is about how families are treated at the point their world changes forever.

We are calling for meaningful, compassionate change in how life-limiting diagnoses are delivered and supported.

We are asking for:

• In-person delivery of life-limiting diagnoses
• Families should not receive devastating, life-altering news over a screen unless there are exceptional circumstances.
• Immediate emotional and practical support following diagnosis
• This should include access to specialist teams, clear guidance, and ongoing support from the moment of diagnosis.
• Clear, consistent communication pathways for families
• Parents should not have to chase answers or fight to be heard after receiving such significant news.
• Recognition of parental concerns and lived experience
• Parents know their children. Their concerns must be taken seriously throughout the diagnostic journey.
• A review of current NHS practices around delivering life-limiting diagnoses
• To ensure families are treated with dignity, compassion, and appropriate care.

Families deserve more than just a diagnosis.

They deserve compassion, support, and to be heard.

No parent should have to go through this alone.

No parent should receive news like this without the care and humanity it requires.

Please sign and share this petition to help ensure no family experiences this again.

— Kayleigh, Mum of two, speaking out for families like mine