By sharing your story you’ll inspire positive system change. You need to be able to stand up for yourself when it comes to your healthcare. Those are the two strands of thinking behind a global initiative aimed at improving patient safety in Ireland and worldwide.
Bernie O’Reilly, who farms in Co Meath, has been a member of the Irish Patients for Patient Safety (PFPS) group since 2015. She joined the WHO-led group nine years after battling to get answers about her husband Tony’s unexpected death from sepsis following surgery in 2006. Because an open disclosure policy didn’t exist in Ireland then, where healthcare staff are supported to admit mistakes, Bernie didn’t get the answers that she wanted.
She and her daughter Áine have told their story at conferences many times since then, however, in order to bring about improvements in our healthcare system.
“Patients’ stories are a catalyst for getting healthcare to do better,” Bernie says.
“In the Patients for Patient Safety group we work with healthcare staff to improve things, not in an angry way. People who come into our group have come to terms – if you ever really do – with what’s happened in their life and they just want to promote better ways.”
Some may have tried the legal route to get answers and compensation, others not, but those in the group are encouraging of healthcare staff, she says.
“We understand that people make mistakes, that things go wrong and that we can make a contribution by sharing our stories. That has been the WHO ethos and our ethos all through the years. Now we’re emphasising the need for patient empowerment, encouraging patients to be more vocal and take more ownership of their care where before we might all have tended to hand ourselves over to healthcare to be fixed.”
Involving us rather than serving us
The PFPS group advocates the patient taking back some of that control and responsibility for their care.
“It should be a shared process between healthcare professionals and the patient, involving us rather than serving us.
“That’s where we are at now, as well as continuing to tell our stories of adverse events to trigger change for the better.”
No longer naive
Bernie’s own attitude to our health service has changed substantially because of her husband Tony’s death. She was told – eventually – that surgeons had left him for over two hours during his operation to attend to another case. This, she believed, led to him developing sepsis and dying.
“The naivete has gone out of me around healthcare,” she says. “I know things can go wrong and that there are lots of adverse events happening to people, like medication errors. We all need to be self-aware related to our healthcare and able to speak up. By doing that we are keeping an extra layer of safety around ourselves.”
Aware that doctors can make mistakes
The idea of not trusting doctors can be difficult for some people, she acknowledges, however.
“One of our new members was horrified when I said you should question your healthcare professional. She said ‘I trust my doctor’. I said ‘I trust my doctor too but I also trust that he’s a fallible human being and at some stage in his career he’s going to make a mistake’. If it happens I want to be there to help him catch it. I don’t want to fall foul of his or her mistake and I don’t want him to fall foul of it either. I want him to be aware by maybe just saying ‘well the last time you did my meds the tablets were pink and this time they’re blue, what’s going on, I want to know’. You’re giving yourself that extra layer of protection by watching out and speaking up.”
Three million medication errors annually
Bernie has more to say on the topic of medication errors. This is in light of the Health Information and Quality Authority (HIQA) estimating that one medication error occurs per hospital patient per day, equating to 3m medication errors in Irish hospitals per year.
“Research from the WHO and the HSE confirms that empowered patients who know and understand their medications, dosage, frequency, etc can greatly reduce the number of adverse events arising from medication errors,” Bernie says.
“Sharing this simple message across Ireland could make a real difference to addressing medication safety in our country – and can save lives.”
Bernie and the PFPS group know of people who are well able to manage their medications at home but end up unwell if they go to hospital.
“Maybe they didn’t get their medication on time or they got the wrong amount, perhaps, or something just didn’t happen as efficiently as it would if they were at home managing their medication themselves.”
Bernie advocates knowing your own medication routine well and keeping your medications list to hand at all times and asking questions if you suspect you are not getting the right tablets.
“Just think about how many distractions and interruptions there are for overworked staff,” she says.
“I know there are protected times at the start of an operation where staff have a silent time where everyone just focuses on what they are doing for this particular operation and on medication rounds the nurse actually puts a bib on her that signals she is not to be interrupted but everybody in healthcare has too much to do now.”
In Bernie’s opinion healthcare needs to get back to where it was 10 years ago in terms of holistic care of patients.
“Right now they have no time to listen to the little old lady who mightn’t have had any visitors for three days and is down in herself. It’s not that nursing has changed but now they have less time to be caring. It is totally pressurised and now COVID has worn everyone out.”
Speak up for yourself – or a family member
You need to be able to speak up for yourself, she maintains, and if you’re not able to speak up for yourself you need an able-bodied person to do it for you. “You need someone to look out for you. Yes, it’s an awful thing to say don’t have trust in your doctors but we should all have the strength to question healthcare staff if we have concerns. It’s about being brave enough to say it. I wouldn’t have had the strength to question any doctor before Tony’s death. Now I question everybody.”
If you have a complaint
The Patients for Patient Safety (PFPS) group doesn’t have a role in advocating for patients but points those with a grievance to the HSE’s Patients Advocacy Liaison Service (PALS) and the Your Service Your Say feedback service.
The PALS officer in a hospital acts as a go-between for the family and the medical team in the event of serious incidents occurring.
“The service is free. They will help you through the process of making a complaint. You start with ‘your service your say’ service, filling in the feedback form. Making a complaint (about adverse event, misdiagnosis, late diagnosis or medical negligence, for example) can be quite a difficult process to do on your own but for some people the national advocacy service will go with them and if you do need to go the legal route, engage in litigation, they will help you through that process. They won’t speak for you but they will stand beside you and help you.”
Address grievances early
Liaison officers in hospitals have the power to consult all the way up to the surgeons, she says.
“They can liaise with anyone on the person’s or family’s behalf to resolve the situation. There is a lot to be said for addressing grievances early. That can stop a grievance becoming a major complaint. Our advice would be to not wait for something to become a big issue. Try and handle it early on.”
Bernie’s work in helping develop the HSE open disclosure policy has kept her going, she says.
“Since the Scally report (into the CervicalCheck programme) there is now a national office and team and the policy has been brought across the services and into the colleges, training students how to have these difficult conversations. Rather than bury everything they are supported to disclose.”
The HSE definition is ‘an open, consistent approach to communicating with patients when things go wrong in healthcare.’ There is now a HSE National Open Disclosure Office. Bernie O’Reilly is a patient representative on the National Open Disclosure Standing Committee.
Keeping a hard copy or a photo of your medications on a smartphone are both good ways to make sure your list is always to hand. Templates of the list are available in pharmacies and healthcare facilities or can be downloaded here.