Getting good healthcare
Good outcomes after stroke depend on getting good healthcare. Our health system and the people who work within it are incredible, but not everything works perfectly. Learning to advocate for yourself, and to navigate the health care system will mean you have a better chance of getting what you need.
It's important for you and your family to start communicating with your stroke team early on in hospital. You should receive a copy of My Stroke Journey, which will help you to know what to expect. If you don't get a copy, give StrokeLine a call on 1800 787 653 and we'll send you one.
Rehabilitation starts shortly after a stroke and can continue for years. While you're in hospital, the amount and type of rehabilitation you get should be in line with the Stroke Foundation's Clinical Guidelines for Stroke Management (see Chapter 5 Rehabilitation).
You or your family can request a family meeting with the stroke team at any time. This is a way of keeping up-to-date with progress and making decisions about treatment, goals and next steps.
When you meet with the stroke team, it helps to prepare a list of questions you'd like to ask, and to take notes. You can also share the load by bringing along a friend or family member. Ask for an interpreter if you or a family member need one.
For suggestions on what to talk about, see our Questions to ask.
If you are concerned about an issue or decision, you may need to make a complaint. All health services have a complaints procedure to resolve issues and to make sure that other people don't have the same problem.
The complaints process usually has the following steps:
- If possible, speak to the health professional involved.
- If that doesn't help, speak to the nurse unit manager.
- If you're still not happy, the health service will have a patient advocate or consumer liaison officer you can contact. You can usually find them on the organisation's website, or ring to ask who to speak to.
- If that still doesn't work, you can go to the government Health Care Commission or Ombudsman. Complaintline has a list of contacts for each state and territory.
For more about self-advocacy, see our blog on How to get the health care you need.
To find out what happens when decision-making becomes difficult because of disability, see Legal and financial support.
If you have ongoing rehabilitation goals when you leave hospital, it should be made clear to you what rehabilitation services have been organised for when you get home.
At some point you may need to think about how to get further rehabilitation. Your general practitioner (GP) is a good first port of call to work out your options and make referrals.
It is possible to be readmitted into a public hospital for rehabilitation after you've been discharged, but it can be difficult. It may be worth exploring if your function has changed (for better or worse) or if you have new goals, and you really need an intensive burst of therapy.
It's usually more likely that you'll access community-based rehabilitation, which is often attached to a hospital. They will assess you using the same criteria of having changed function or new rehabilitation goals. Community-based rehabilitation is a good option if need more than one type of allied health professional, e.g. speech therapy and physiotherapy. You can also give StrokeLine a ring on 1800 787 653 to plan how to discuss any changes or goals during your assessment.
You can also check out what services your community health centre offers.
When we think about private health insurance, we usually think about accessing our extra or ancillary benefits to see a local allied health professional. But as discussed on EnableMe, if you have full hospital cover it is possible to get rehabilitation as an outpatient at a private hospital.
Alternatively, you can get up to five Medicare-subsidised therapy sessions under a Chronic Disease Management Plan, which your GP can arrange. There is usually a gap payment, so make sure to check this when you make an appointment. This is also one of the few options available to people in aged care homes.
The flowchart below shows how the options depend on your circumstances.
Click image to see full-size
Choosing a GP
When you're out of hospital and your formal rehabilitation services have ended, you often have to find your own health professionals. It helps to have a good general practitioner (GP).
Ask your neighbours, friends and family to recommend a GP, or check websites like HealthEngine. Look for things like the GP’s location and charges, as well as after hours and visiting services. You can try out a few different GPs before making a commitment.
A good GP is a good listener and a clear talker. They should explain your different treatment options and why they recommend a particular course of action. They should give you information about other services and supports that may be able to help you. They should make you feel confident that they want to work with you to proactively manage your health and keep you as well as possible.
When you live in a small town or even on the suburban fringe, choice can be limited. Make sure you get the most out of your GP visit:
- Follow the guidelines above about self-advocacy, including writing down questions and answers, and getting someone to come with you.
- Book a longer visit if you have more to talk about than will realistically fit in a standard consultation.
- At the start of a consultation, tell your GP everything you want to discuss, and tackle the most important issues first.
GPs often talk about the ‘doorknob moment’, which is asking the most important question when your hand is on the doorknob as you leave. Whatever the problem is, remember your GP has heard it many times before.
At the end of your visit, you should understand what might be wrong, and if you need any further tests or treatment. You should also be clear about what happens next and what you need to do.
To get better after a stroke you need good health care.
To get good health care you need to:
- Know what you want
- Say what you want
- Know how to use the system.
Talk to your stroke team when you go to hospital.
You can talk to your stroke team.
Your family can talk to your stroke team.
You should get a book called My Stroke Journey.
My Stroke Journey tells you what will happen to you.
If you do not have My Stroke Journey then phone StrokeLine on 1800 787 653.
Rehabilitation helps you get better after a stroke.
Rehabilitation starts shortly after a stroke.
Rehabilitation can go on for years.
The Stroke Foundation has Clinical Guidelines for rehabilitation.
The hospital should use the Clinical Guidelines.
You and your family can have a family meeting with the stroke team.
You can ask for a family meeting at any time.
In the family meeting the stroke team will:
- Tell you what is happening
- Ask you what you want
- Tell you what will happen.
Write down questions to ask the stroke team.
Write notes of what the stroke team says.
Bring a friend or family member to help you in the meeting.
Ask for an interpreter if you need one.
See a list of Questions to ask.
If something goes wrong
If you are not happy with the stroke team you can complain.
To complain you:
- Speak to the health professional if you can.
- Speak to the nurse unit manager.
- Phone the hospital and ask for the patient advocate or consumer liaison officer.
- If the hospital does not help, tell the government.
The government has a Health Care Commission or Ombudsman.
Find their phone numbers on the Complaintline website.
A stroke can make it hard to make decisions.
To find out what happens then see Legal and financial support.
You might need more rehabilitation when you go home.
The hospital should help you get more rehabilitation if you need it.
The hospital should tell you what rehabilitation you will get.
Your doctor can help you get more rehabilitation.
Talk to your doctor about what you need.
You might need more rehabilitation if:
- You have gotten better.
- You have gotten worse.
- You want to do something different.
Ask your doctor if you can go back to the hospital for more rehabilitation.
You might get more rehabilitation out of hospital.
This is called community-based rehabilitation.
It might be at a community health centre.
It can help you see a physio.
If you have private health insurance you might go to a private hospital.
You might get rehabilitation through Medicare.
This is called a Chronic Disease Management Plan.
Ask your doctor if you can get it.
Ask your doctor if it will cost you money.
Ask your doctor about what you can do.
Phone StrokeLine on 1800 787 653 for more help.
How to find a good GP
A good doctor helps you when you are out of hospital.
A doctor is also called a GP.
To find a good GP:
- Ask your neighbours
- Ask your friends
- Ask your family
- Look on the internet. Try the website HealthEngine.com.au.
- Where the GP is
- How much they charge
- When are they open
- Can they come to your house.
You can try a few GPs to find the right one.
What makes a GP good
A good GP:
- Listens to you
- Explains things to you
- Tells you what else will help you
- Works with you to keep you well.
When you see the GP:
- Write down questions.
- Write down answers.
- Ask someone to come with you.
- Book a long visit if you need it.
- Tell the GP what you want to talk about.
You can ask the GP anything.
After the visit you should know:
- What might be wrong.
- What tests you might need.
- What happens next.
- What you need to do.