AMR Voices Series: Amplifying the patient voice
11 Jan 2021
Author: Arlene Brailey, Patient Support Officer, Antibiotic Research UK
Suffering with a resistant bacterial infection is a topic which is not often discussed in the public domain, nor particularly widely in healthcare settings. And yet, for those afflicted by these under-recognised and misunderstood illnesses, it immediately conjures up fear. Fear of what happens if an infection flares up again, fear of being hospitalised with little warning, fear about not getting to the hospital quickly enough.
Then there is the ultimate, almost unspeakable terror – that there will eventually be no antibiotics left that can treat their infection. This is the deep-seated fear that invariably surfaces in every conversation when patients open up and talk about living with infections caused by resistant bacteria, and their devastating, life changing effects.
The Patient Support team at Antibiotic Research UK was set up to offer much needed support for these patients. The charity recognised that people living with resistant and recurrent infections lacked someone to speak to, and importantly someone that would listen to them, with expertise and, importantly, time – a luxury which few health professionals have.
My background is as a pharmacist, and alongside my colleague Jodie Christie, a nurse, we have established a confidential email and one-to-one telephone line for patients (and their families) to discuss anything related to resistant or recurring infection.
While we do not offer personal medical advice, we support and guide the people who contact us to valuable sources of help and information. We help distil the pertinent questions a patient really needs to ask their doctor or health professional. We have also prepared extensive website resources about different types of resistant bacteria.
The most effective means of supporting patients has been through the sharing of individual experiences. This often proves cathartic for patients, being able to share that experience with others, and broadening understanding of how it feels to live and deal with these infections, and the day to day limitations it places on lives. Sharing brings patients together, creates a common bond and most important of all, reduces that extreme isolation that so many of those that I speak to feel.
AMR cannot be fully understood without involving the unique stories of the people who are living with it. They put the issue into human context and demonstrate the urgency and reality of what many describe as the ‘next pandemic’, something that still seems to elude general public understanding – even as we’re living through Covid-19.
The people we speak with and support every day desperately want their voice to be heard. They worry about the lack of new antibiotics – not only the threat it poses to their lives, but the implications this has for their children and grandchildren. From routine operations, to a grazed knee, the risk of contracting a life altering resistant infection is increasing. AMR is one of the greatest threats to modern medicine. With limited government and medical industry support hindering the progress of developing accurate and rapid testing of bacterial infections, the problem of resistance is only exacerbated.
Patients want their voice and this message to be heard loudly and clearly.
The Longitude Prize would like to thank Arlene and her colleagues at Antibiotic Research UK for the ongoing support they have shown the Longitude Prize.
Antibiotic Research UK
Antibiotic Research UK (ANTRUK) is a national charity in the UK dedicated to finding new antibiotics against resistant bacteria. The Patient Support team at Antibiotic Research UK can be contacted at email@example.com or by telephoning 07367 784 114.
Between July and November 2020, the Longitude Prize reached out to contacts around the world to connect with people living with – or who have experienced – drug-resistant infections, to better understand how the Covid-19 pandemic is shaping their lives. The team also spoke to medical professionals, doctors and pharmacists, to capture their perspectives. Combined, the stories shared in this report provide the reader with a first-hand look at how the antimicrobial resistance (AMR) and Covid-19 agendas meet and what people living with resistant infections or have overcome them think needs to be done. We will be sharing this as a series for the next few months. You can find all the stories published thus far here.