Advocate · Explorer · Tubie

Life doesn't stop
at the end of a feeding line.

I'm dependent on TPN — intravenous feeding, because my gut can't do the job on its own. This is my journey, my yearly challenges, and why I won't let it keep me indoors.

My Journey Yearly Challenges
01

My Journey

Before TPN, there was a hard road — losing the ability to eat, and everything
that took from me before I found a way to accept it and keep going. That story
deserves to be told properly, in full, in my own words.

02

A day in the life

TPN means nutrition delivered straight into the bloodstream through a central
line, usually infused over a set number of hours — for a lot of tubies that's
overnight, hooked up to a pump while you sleep. Line care has to be done with
sterile technique every single time, infection is always the risk hanging over
it, and if you're heading out during the day, the pump and feed come with you
in a backpack.

03

Hearts of Gold

EMVAS 24 Volunteer Awards winner badge

Twice now, in 2024 and again in 2025, my name has gone forward for the Eyres
Monsell Hearts of Gold Volunteer Awards. At these awards everyone who is
nominated is a winner, and everyone goes home with an award. I still find it
strange standing up there. The work itself is quiet. It happens in messages
late at night, in forms nobody else wants to fill in, and in sitting with
somebody while they take in news they did not want. Having a room full of
people clap for that took some getting used to.

  • First nomination31 July 2024
  • Second nomination13 August 2025
  • WhereEyres Monsell Club, Little John Road, Leicester
  • Hosted byWard councillor Kaz Pickering
The write up

The quiet lifeline

Two-time Hearts of Gold nominee for artificial nutrition advocacy.

LEICESTER. There is a profound kind of courage required to translate personal medical vulnerability into a relentless force for other people's survival. In neighbourhoods across the UK, advocacy is often pictured as loud and public, featuring banners in the streets and megaphones in town squares. But the most vital advocacy is frequently the quietest kind, consisting of late night guidance, fierce administrative battles fought on behalf of the overwhelmed, and the steady, reassuring presence extended to those navigating a medical reality that much of the world barely understands.

For two consecutive years, in 2024 and 2025, that quiet, lifesaving work has earned Darren Carter back to back nominations for the Eyres Monsell Hearts of Gold Volunteer Awards.

Hosted by ward councillor Kaz Pickering at the Eyres Monsell Club for Young People on Little John Road, the Hearts of Gold awards exist to honour the structural pillars of the local community. They celebrate the individuals whose labour of love keeps neighbours afloat. Yet while many nominees are recognised for traditional community service like tending green spaces, running youth clubs, or organising food banks, Darren was recognised for a sphere of advocacy that is both intensely specialised and profoundly necessary, supporting those who rely on artificial nutrition and tube feeding.

To live with a feeding tube or manage artificial nutrition is to inhabit a complex, often isolating landscape. The medical logistics alone are daunting, involving pumps, formulas, line management, and the constant vigilance against complications. But beyond the physical machinery lies a deeper vulnerability. Social isolation, dietary grief, and the struggle to navigate a medical system that frequently overlooks the lived experience of chronic illness and nutritional dependency.

This is where Darren stepped forward.

Through relentless, unyielding advocacy, Darren has spent years ensuring that others facing tube feeding never have to walk that path in the dark. Whether translating complex medical guidance into accessible human reassurance, fighting for better resources, or simply offering the profound comfort of being truly understood, the impact reaches far beyond the borders of Eyres Monsell. It is a form of advocacy that demands immense emotional resilience, turning private hardship into a public bridge of empathy.

The most vital advocacy is frequently the quietest kind.
Darren Carter receiving his award on the night
Collecting the award at the Eyres Monsell Club.
Darren Carter being hugged, wearing the Life Without Food jacket
The Life Without Food jacket, worn on the night.
Eyres Monsell Volunteer Awards Hearts of Gold poster, Wednesday 13 August
The 2025 night, 13 August.
04

On mental health

TPN and Mental Health.


Metal health effects on tpn

Total parenteral nutrition (TPN) is a medical treatment that involves delivering nutrients directly into a person's bloodstream through a vein. While TPN can be a life-saving therapy for individuals who are unable to absorb nutrients through their digestive system, it can have potential mental health effects.

One potential mental health effect of TPN is the feeling of isolation and lack of control. Patients receiving TPN may feel disconnected from the world as they are confined to a hospital room or home and are unable to eat normal meals with others. This can lead to feelings of loneliness,

depression, and anxiety.

Another potential mental health effect of TPN is the fear of complications and side effects. TPN carries risks such as infection, electrolyte imbalances, and liver and kidney damage, which can cause anxiety and stress in patients receiving the treatment.

In some cases, TPN may also cause mood changes, such as irritability or confusion, due to imbalances in electrolytes or other nutrients in the bloodstream. These mood changes can be temporary and may resolve with adjustments to the TPN formula.

It is important for healthcare providers to monitor patients receiving TPN for mental health symptoms and provide support and resources as needed to address any concerns or issues that may arise.

05

Yearly Challenges

Every year I take on a challenge to show fellow tubies that TPN doesn't mean life stops — it just means doing things a little differently.

Challenges will appear here soon.

06

Snapshots from the journey

07

Building for other tubies

My journey pushed me to build the tools I wished existed for people like me.

Personal Health Passport

A digital health record for complex patients, so nobody has to repeat their story to every new clinician.

personalhealthpassport.co.uk →

YourTubie Passport

Day to day tracking for tube feeding, feeds, medication, line care and supplies, all in one place.

yourtubiepassport.trymysite.co.uk →

Fellow tubies, carers, or clinicians — I'd love to hear from you.

Get in touch