Our Patient Support Officer, Arlene Brailey, the country’s first Support Officer, supporting people with antibiotic resistant bacterial infections writes;
As Patient Support Officer, I have heard from so many patients who worry about where to get reliable information. They want to know what websites and sources of information to trust. I am here to help them – and you – to navigate through these. I’ll also help signpost to accurate and dependable information sources. Of course, often those living with bacterial infections resistant to antibiotics simply need someone to turn to. They want someone who will listen to their fears and concerns without judgement. As Patient Support Officer, it is a real privilege to support patients and their families through these times of stress, anxiety, uncertainty and sometimes fear for the future too. I am often asked: “What if there are no antibiotics left someday which still work for me?”
It can be a time of great anxiety for them, leaving them feeling terribly alone and isolated. They must explain to family, friends and even employers just how this resistant infection affects all aspects of their lives. Ongoing infection can cause immense fatigue which is very hard to explain. Patients may also suffer with a set of symptoms they don’t want to discuss with others – especially a UTI with all the restrictions it places on daily life! They might also get a real sense of being that ‘unreliable friend’ when they have to continually cancel plans at short notice! And all because they don’t know when the bacteria resistant to antibiotics which they carry in their body may flare up into serious infection yet again!
Many of these patients have developed a remarkable resilience and acceptance in how their life has changed. They no longer recognise their lives because of antibiotic resistance. But they don’t always feel like that. Sometimes it’s quite overwhelming and they desperately want to see new antibiotics developed – and soon! They want to see governments respond to Antibiotic Resistance in the same serious way they are responding to COVID-19. It needs to be a matter of global urgency! Sadly patients with COVID-19 infection are much more prone to getting a secondary bacterial infection which can lead to sepsis and death. For more information about the link between virus and bacterial infections click HERE
Arlene is here to support patients with resistant infections. She’ll to listen to them – and to you too – if you have concerns or need information about resistant bacterial infections. If you would like to contact Arlene, you can reach her by emailing firstname.lastname@example.org or by texting or calling the confidential patient support number 07367 784114.