Pictured: Danny Sweeney McGinley, CEO of IHNAPA and Dr Vikrant Parihar, Consultant Gastroenterologist
A new patient and carer advocacy group in Donegal is appealing to local companies to donate any usable office equipment to support the establishment of a local base.
The Independent Home Nutrition Advocacy and Patient Care Alliance (IHNAPA) is a not-for-profit initiative calling for structured support to protect some of Ireland's sickest and most invisible patients - those living at home on artificial nutrition such as PN, TPN and HPN - and the family carers trying to keep them alive.
Established by Letterkenny management consultant Danny Sweeney McGinley, Chair of Letterkenny Patients Forum, the group seeks to build a fully comprehensive national framework, register and patient-safety pathway for adults and children dependent on home artificial nutrition.
"We're doing hospital care in our kitchens," says Danny.
Danny began campaigning after caring for his late father, Patrick McGinley, who required HPN for almost three years. His family were left completely unsupported by community health services, forcing him to turn the house into what he describes as "a mini emergency room".
"We were left to manage high-dependency medical care alone. I had to buy a bladder scanner, ECG machine and portable defibrillator, take bloods twice a week, monitor fluids and provide IV nutrition into his heart," he said.
IHNAPA's leadership team also includes Dr Vikrant Parihar, Consultant Gastroenterologist at Letterkenny University Hospital; Dr Hemnaath Ulaganathan, Specialist Registrar at Galway University Hospital.
Dr Parihar says the risks of untrained carers managing hospital-level treatments are extreme: "A patient on TPN is effectively a critical-care patient at home. One infection can be fatal. The physical, emotional and mental burden on families is beyond measure and hugely unfair."
"These families urgently need a national safety net," he added.
To continue its early work, the organisation, led entirely by volunteers, is trying to establish a small office base in Donegal and is asking companies to donate any usable office equipment they no longer need.
Older laptops or desktops, monitors, printers, paper, envelopes or any basic supplies would be gratefully received.
With no public funding in place, practical support from the local business community will play a vital role in the group's growth as it begins outreach to patients nationwide.
Items urgently needed include:
* Working laptops and desktops
* Printers, paper and envelopes
* Basic office furniture and monitors
* Professional volunteering from administrators, bookkeepers or social media specialists
To offer equipment or business-in-kind support, please contact:
[email protected] or www.ihnapa.com