Leanne’s story: When connectivity becomes a life-or-death issue

When a mobile signal is life support

Leanne's daughter's insulin pump relies on a continuous connection to a sensor and must be linked to a modern smartphone. If the connection fails, the pump cannot receive the correct dosing information.

Leanne explains the terrifying speed of the risk:

"If it disconnects, that sensor is not allowing the pump to know what her body's doing. In 20 minutes, she could be living her best life, dancing like a fairy. Twenty minutes later, she's on the floor, conked out. In that 20 minutes, with no connection, it's life-threatening."

The financial toll of Leanne’s situation is no small matter either, she explained that “you’re looking at a £300 minimum” when buying a phone compatible with her daughter's sensor, and stressed that “it’s not a choice that I want to buy this specific phone. I’ve got to.” Despite needing to constantly buy the newest, most expensive phones just to maintain the connection, and paying for unlimited data, the system is unreliable. They frequently encounter 'no-spots' where the 4G or 5G cuts out, forcing Leanne and her daughter to frantically search for a signal.

Leanne has approached her phone provider and cited her Disability Living Allowance as the reason for needing the essential technology, only to be told the unlimited service should be sufficient. But the reality is far more dangerous.

"A number of times, we have ended up in hospital because it’s disconnected. Trusting the technology is life and death. Not just for my daughter, but for everybody with Type 1 diabetes."

The stress is constant. Leanne is forced to constantly check her phone, unable to sleep soundly, worried about her daughter's sensor beeping or disconnecting.

A call for change in Barnsley

After connecting with the Forge Community Hub in Barnsley, part of the National Digital Inclusion Network, Leanne found a crucial platform to voice her family's critical digital challenges. Her experience highlights urgent issues in the local area regarding connectivity, cost, and access to essential services.

Leanne's ideal scenario for support includes:

• Affordable devices: Leanne suggests that if specific, expensive phones are required for life-saving medical tech, they should be provided or subsidised (at least a 50/50 cost split).
• Fixing 'no-spots': Mobile and broadband providers must urgently update connections in local areas with low or no accessibility, recognising that for some people, data failure risks lives.
• Non-digital awareness: Barnsley Council and local authorities must use face-to-face methods - leaflets, knock-on doors, libraries - to promote digital support, because if somebody doesn't have internet access, they won't see online promotion.

"If you've got no hotspots, you're playing with people's lives. Something’s got to be done... I really need help with mobile data."

Leanne believes action must be taken immediately to protect digitally excluded people who rely on connectivity for essential services. Good Things Foundation is using Leanne’s story to engage directly with Barnsley Council on the need to address these barriers within the community.