How to get the health care you need

When my grandmother was in hospital this year, I saw a side to my mother I’d never really seen before. She was a tireless and effective advocate for grandma’s best interests. She built relationships with the people caring for grandma, she called on friends for advice and she spoke up when necessary. She worked the system like a professional.

Our health system and the people who work within it are incredible, but not everything works perfectly. Things go wrong and sometimes it’s hard to get what we need. Whether you are managing your own health, helping out a loved one, in hospital or at home, there are lots of things you can do to get what you need.

Here are ten things to think about, based on what I saw my mother do, and on all the things I’ve learnt from stroke survivors and carers since starting at the National Stroke Foundation.

Become the expert

Stroke survivors and carers will tell you that the biggest challenge they faced was getting from stroke beginner to stroke expert – fast. At a recent Stroke Foundation forum, stroke survivors and carers wrote a list of the qualities and resources needed to get to expert. These included hope, support, education, time, experience, encouragement, optimism, creativity, enthusiasm, knowledge, flexibility, resources, resilience, motivation, self-reflection and honesty.

Practically speaking, it boils down to a few key steps. Do your research. Get prepared for each ward round, consultation or appointment. Make a list of your concerns and questions. Ask questions. Ask more questions.

The single most important ingredient is to embrace your right to ask as many questions as necessary and as often as necessary until you understand all your options. There are never, never any stupid questions. And say it out loud straight away if you don’t understand something.

Armed with all this, take charge. No one knows you better than you.

Write it all down

Get a big book or a tablet. Never write things down on scrap pieces of paper, they’ll just get lost. Ask health professionals (even those you’re booking appointments with over the phone) their names and write them down. It makes it easier to follow up when things go wrong (which they will). When you are being discharged from hospital ask “Who do I call if things go wrong or I need advice?” and write down their name and number. Recognise that you’re not at your best when there’s a lot going on, and ask someone to be with you at critical times. Between the two of you, you’ll get the most important points.

Work it

Make friends – or don’t. Two stroke survivors compared their approaches at our forum recently, and while they were radically different, they were equally effective. Survivor number one counted on building relationships with the rehabilitation staff, making sure they knew and liked him as a person. He said “You need to work the system in your favour and get buy in from others who can help you achieve your goals.” Survivor number two was happy to be nice, but also cultivated a reputation for grumpiness and for letting people know when things weren’t up to scratch. He said “I just wanted to set the pace. I wanted my dignity back.” There’s no one way to work it, but it is definitely worth thinking through the strategies you can use with different people and in different situations.

Don’t give up

Having written everything down, you’ll have notes to remind you what your health care professional said they would do and by when. Make sure you follow up if you haven’t heard or if it hasn’t been done. After that, if it still isn’t happening, don’t hesitate to put your concerns or questions to them in writing, or to let someone more senior to them know what is (or isn’t) happening.

Lots of things go wrong in health care due to communication breakdowns, or systems that grind to a halt inexplicably. Make sure you’re in the driver’s seat. One case manager I worked with told me he always told his clients “Be pushy like me! If you ring someone and they can’t help you, ask them why. Then ask them to refer you to someone who can.”

Hurdles are put there in the hope you’ll give up. Don’t give up them the satisfaction.

Influence and negotiate

If you see a problem developing, think about addressing it directly. Make time to speak to the person involved or someone else who can help. Then simply say “I would like to talk with you about…” and then describe how you see the situation. If things have generally been going well apart from this particular problem, take the time to acknowledge that.

Your feelings may be running high by this stage, but keep your cool. If you think you’ll struggle, ask someone to accompany you, or even take the lead.

In thinking about your issue, think about what you would like to see happen, but keep an open mind. Going into a discussion thinking “I want this and nothing else will cut it” limits your choices. Keep listening to everyone involved, others may have an even better solution than you. Making demands takes a lot of options off the table. We’re often most successful when we listen and really understand what others are trying to communicate to us. By listening we often learn more or even find a new way to look at the issue. We’re also leading by example by being respectful in communicating with others.

If you are getting upset, take a deep breath and slow down.  Make sure to let the other person speak, and give them time to think about and respond to what you are saying. Give yourself the same courtesy. And don’t rush to fill a silence. You’ll be amazed at what people will come up with if you give them time, and leave it to them to take the lead.

The health system is a huge, complex machine but the people that work in it are just people. Like all humans, they are full of worries, confusion, imperfections, kindness, genius and generosity. They are generally there because they care. They have bad days and years like everyone, so when things aren’t perfect, don’t be afraid to say so, but don’t make it personal.

Remember always to acknowledge what’s been done well and give a compliment where deserved.

Get the A Team

Having a good GP and specialist is important – it is very difficult to manage your general health, let alone your post-stroke health, without an A Team. It may be time to find a new doctor if you don’t feel comfortable talking to them or if you feel like they’re not really listening. If you often find you don’t understand the advice your doctor gives you, it’s definitely time to think about moving on. The same applies for any health professionals. Find people you trust, and stick with them.

Use a sounding board

Talk about your health and your health care with someone you trust. If you’re having problems, you can ask for a reality check: “Is this reasonable?” “What would you do?”

Use an advocate

Sometimes asking someone to advocate for you can help. A bit like asking someone to bid for you at auction if you are worried you might not be the best person for the job! Just bringing a family member or friend into the conversation can help. In hospital, family meetings can be really helpful for bringing it all together and sorting it out. You can request a family meeting at any time. While in hospital, you can contact the Patient Advocate or Consumer Liaison Officer for advice and advocacy. These people work within hospitals and are a great resource to help you work through issues or concerns. When they get involved, things tend to happen!

Make a complaint

If you have tried to influence and negotiate and it isn’t working, making a formal complaint can ensure that the issue is taken seriously and everyone is highly motivated to see it resolved. All health services have established complaints procedures. Any community services receiving government funding must also have a established procedure. Organisation websites often have information on their complaint procedure. You can also just ring to ask what to do and who to speak to.

If you are in hospital, the best thing to do is to raise it directly with the relevant health care professional wherever possible. If you’re not satisfied, speak to the nurse unit manager. If you’re still not happy, contact the Patient Advocate or Consumer Liaison Officer. From there you can contact the Ombudsman or Commissioner in your state. They handle complaints about all health care provider, not just those in hospitals.

If you are very concerned about an issue or decision, and you’ve tried and failed to work it out, making a formal complaint will mean you won’t spend your time wondering what might have happened if you’d pushed a bit more. It also gives health services the opportunity to act on your concerns and make changes to ensure other people don’t have the same experience. All complaints are formally managed, which gives your issue a high profile and can result in change for the better for everyone.

Know your rights: www.safetyandquality.gov.au

Contact your local MP

An important part of every Member of Parliament’s job is to represent the constituents of their electorate. Your local MP is a good source of advice, and can raise your issues with the relevant Minister or government department. For health-related matters, call your local state government MP. 

Call StrokeLine

Finally, don’t forget to call StrokeLine for advice. Every person and their situation is different. For impartial, expert advice, a sounding board and some fresh ideas, call StrokeLine.

StrokeLine provides advice on stroke prevention, treatment and recovery. StrokeLine is a practical, free and confidential service. StrokeLine’s allied health professionals can help you manage your health and live well.

Call 1800 787 653 Monday to Friday 9 am to 5 pm, AEST (Australian Eastern Standard Time)
Email strokeline@strokefoundation.org.au