How to be a patient: It’s okay to make a fuss about yourself

Our healthcare system is in crisis and the majority of us will find ourselves dealing with the service at some point in our lives. Many will get excellent care from skilled professionals but may also experience glitches, delays and communication issues. People with ongoing experience of Irish healthcare develop their ways of engaging with it. For this article we asked patient advocates, as well as people with experience as patients or carers, for the advice they would give to newcomers to the system.

These suggestions are no substitute for widespread systemic change. And for some people they might look like common sense. But others approach healthcare staff with old-fashioned deference and those new to the complexities of the system can expect something smoother. People believe different parts of the health service are more joined up than they are and underestimate how much they need to co-ordinate their healthcare.

Roseleen Flaherty, a cancer nurse and psychotherapist with the Irish Cancer Society, thinks people should feel empowered to ask questions and be at the centre of their treatment. “You’re helping [the healthcare staff] form the picture that will help them give the best treatment. Patients have the best outcomes if they ask and they talk and engage ... it’s an exchange. You’ve got to see that these people are members of your team.”

Recognise that your time is also important

Flaherty says that many patients leave consultations without raising the issues that are important to them. “Many patients say: ‘Oh they’re very busy in there, I didn’t know what to say. I’d forgotten so much of the information I wanted to share.’ It’s so considerate of them. But they suffer unnecessarily afterwards because they didn’t get the best from the consult.”

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Niamh Power is a trained hospital nurse who works with a private sector patient support service. She also has experience negotiating the system on behalf of family members. “If you get time with these people view it as really valuable time,” she says. “It’s an Irish thing not wanting to be a bother ... I like to say: You have to give that person sitting in front of you a job ... If you’ve got 10 or 15 minutes in front of these people use that time ... Have a clear goal for the appointment.”

Prepare

If it’s an appointment at an unfamiliar medical facility, do a little preparation to help reduce your stress, says Roseleen Flaherty. “Do you have to drive? How long will it take? Where will you park? Do you need parking money? And bring things with you that will help pass an hour or two – books, music, drinks and snacks, a charger for the phone ... And wear layers that are easy to take off.”

Consider bringing someone with you

If you are expecting the results of important tests or are feeling anxious or sick, bring a friend or family member with you. They will help you ask questions and assimilate new information. It’s common for people to miss things that their doctor has said, particularly if they’ve heard something worrying. “If there’s somebody with you, they’ll hear the rest,” says Flaherty. “This was one of the hardships during Covid, people didn’t have their buddy with them.”

Write down your questions

Flaherty believes that anyone who has a need for ongoing healthcare (most of us as we get older) should have a “medical notebook”. She defines this as “a place to put all your information about your health”.

This will include your medical history, your medications and your insurance number or medical card details. Flaherty says that as soon as you get an appointment you should also write down the things you’re concerned about and the questions you have. “Your facts need to be ready when you go into the consult.”

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“Sometimes you can go into an appointment and you get a bit bamboozled and forget things,” says Niamh Power. “List your concerns. What is it that you’re most concerned about? ... Write down [in advance] the issues you have had in the past. What are you dealing with currently? What’s your number one concern? How long has it been a concern for? What is influencing it for better or worse? What have you tried? Have you been to someone else for this? If you feel you have information, bring it with you ... And know your family history.”

Do not be afraid to ask your questions

Most healthcare professionals value questions, says Ann-Marie Hardiman, who has experience dealing with the system on behalf of her brother, who is intellectually and physically disabled, and her parents. “People can be a bit nervous asking questions because they don’t want to be thought of as a troublemaker ... But I’ve found overwhelmingly that if you’re assertive but also pleasant and polite you nearly always get the answers ... They react really positively to you taking an active interest in what’s going on with you.”

Make sure you understand what you’ve been told

Some medical professionals can drift into medical jargon. “It’s like going into a different country,” says Roseleen Flaherty. “It’s overwhelming ... At the end of that session before you leave, say: ‘This is what I understand you just said, am I hearing you right? The plan is to do this ...’”

Niamh Power suggests getting them to write down important details for you. “Because you can kind of take in information in the minute but then forget when you walk out the door.”

Know what’s happening next

Flaherty says it’s important for patients to know what check-ups, tests or referrals are happening and when. “Ask [your doctor] to write down the main points of what’s going to happen next, even if it’s just on a Post-it note. It’s in everyone’s best interest that people understand what’s happening.”

Power thinks it’s important to be proactive about this. “If you go to a GP and they say, ‘I’m going to refer you for an ultrasound’ ... you might think, ‘Okay I guess I’ll be told.’ But be proactive. Get the information so you can follow up yourself. Because things happen and people forget.”

Follow up

If you hear nothing about the tests or check-ups you’re expecting, follow up. Some people are reluctant to chase the services they’re entitled to, but the reality is that sometimes people fall between the cracks and are forgotten.

“You need to say, ‘Have you heard about my bloods?’ ‘Have you heard about my chest X-ray?’ ‘I’m supposed to be down for a CAT scan. Does anybody know when that’s going to be happening?’” says Ann-Marie Hardiman.

Alan, who contacted us via Twitter, was treated for a serious cancer last year. He says he got excellent care but was initially bewildered by all the tests he was being sent for. “You had all these different people ringing up saying, ‘Oh, you’ve been booked in for this’ ... I just made it my business that I would take any cancellation. If you’re passive, this process could go on for months. Whereas if you feel comfortable calling up ... it can happen much quicker.”

Most health professionals appreciate reminders, says Flaherty. “There isn’t one of them who won’t want you to prompt them if there’s no follow up ... They don’t want you to fall off the system and not get timely treatment.”

Know about your medication

In the health system you will be asked about the medication you are on repeatedly. Flaherty says it can be helpful to get your pharmacist to print out and check the details of your medications. “So it’s accurate, and everything is spelt right.”

Caitríona, who got in touch via Twitter, has had long experience dealing with medication for a number of conditions including diabetes and rheumatoid arthritis. She says it’s also a good idea to get your pharmacist to double-check that any new medication doesn’t clash with something you are already on. “Really familiarise yourself with all that,” she says.

Don’t assume doctors and nurses have registered all the issues you have with medications, says Ann-Marie Hardiman. One of her relatives has issues with ibuprofen. “I’ve had situations where I’ve come in [to the hospital] and she’ll say, ‘I’ve this terrible rash and I don’t understand why’. I’m looking at the meds going: ‘Did they give you ibuprofen?’”

Find out other points of contact

Alan says he didn’t always manage to ask the questions he wanted during his consultations. “But every consultant has a secretary. I would then send her these questions that she would ask the doctor.”

Caitríona also recommends secretaries and nurses as a font of knowledge if you still have questions. “Nine times out of 10 they know the answer as well as the doctor.”

Who to contact can be even more bewildering for family members when a vulnerable relative is in hospital. It’s often hard to get through to people. “My dad was a hospital porter for about 25 years,” says Ann-Marie Hardiman. “He’s a great man for saying, ‘What’s the direct number for the ward?’ Or ‘What’s the direct number for the doctor?’ Or you can get them to give the doctor your number and ask them to ring you. A lot of people won’t do that, but the registrar will often call you when they get a moment and talk through what’s going on.”

Alan also suggests ringing the nurse on the ward if you’re checking on a relative. “You can get such a level of information from them. And again, because you’re not sick, and you’re not on drugs, you can feed that information to the patient in a way that’s much more understandable ... Even after my operation, I would ring the ward I was in [if worried] because I knew that they knew the situation ... You have to be comfortable picking up the phone ... I’ve never experienced a situation where I got reprimanded for that ... You learn that it’s okay to make a fuss about yourself.”

Do not assume that doctors share information

Patients sometimes mistakenly think their healthcare information is all on one centralised system. In reality, says Stephen McMahon, co-founder of the Irish Patients Association, “the system is still in silos. Despite the billions and billions spent over the years ... one system isn’t talking to another.”

This deficit puts the onus on the patient to ensure their doctors have the information they need. Flaherty says to assume that your doctor doesn’t know everything they need to know, particularly if you’re seeing more than one specialist. “One specialist is looking at one part of your body, whereas the other specialist is looking over here at this part. You’re the common denominator here. It’s your body, so you need to let them know.”

There is support

Some people we spoke to believe a certain amount of health research on reputable websites can be helpful but that there are limits to its usefulness. “If you go to Doctor Google you could have yourself in a terrible state unnecessarily,” says Flaherty. “For reliable sources [ring] the 1800 numbers of groups like the Irish Cancer Society and say, ‘This is what we heard today’. And then we can siphon through what they heard and try and make meaning of it.’”

She thinks patient groups are another good way for people to get useful information. Most hospitals also have staff to contact if you feel like your treatment is not progressing the way it should. “There is an in-patient advisory liaison [in most hospitals],” says Flaherty. “So if you are having difficulty, remember that person is there as a mediator who will follow up and make sure you’re on the right track.”

Do not be afraid to complain if necessary

You have a right to good care and treatment, says Stephen McMahon. “It’s been my experience, that when something doesn’t go right for private patients they get assertive. In many cases, the public patient [feels] disempowered ... They don’t realise they have a right to timely care, and a right to information and a right to complain.”

If your issues aren’t addressed, complaints can be made through the HSE’s Your Service Your Say process and the Patient Advocacy Service (www.patientadvocacyservice.ie) is there to support anyone who wishes to make a complaint about their treatment in a public acute hospital or nursing home. If anyone feels unhappy with their treatment they can contact the service and talk it through with them. “We will help people if they want to go the complaint route,” says the Patient Advocacy Service’s service manager Georgina Cruise. “We help them to prepare their correspondence, prep for meetings. We will attend meetings with people too as a support. And we basically ensure, for the service users, that they’re heard and informed.”

Go easy on yourself

“Don’t be too hard on yourself, either as a carer or as the person who is dealing directly with the health service about their own illness,” says Ann-Marie Hardiman. “You’ll have days when you’ve been on the phone trying to get information or when you’ve been filling in forms or trying to get the right person on the phone or sussing out medication and you’ve had a really frustrating day and you just feel like crap. Take it easy on yourself ... my approach is to rely heavily on black humour. My friends and I have developed ‘family tragedy bingo cards’. We’re now thinking of setting ceremonial fire to them because they’re all full.”