"If health care is on the table, then patients and families should be at the table .... every table .... every time".        Jim Conway, IHI

Patients with chronic health care needs and disabilities and their families have important expertise and experience that is unique and essential to improving the quality of health care. 

How can you use your expertise? 

Participate in an patient/family advisory committee at the clinic or hospital that you use frequently.  If they don't have a patient/family advisory committee help them start one.

http://www.familycenteredcare.org/tools/downloads.html

Make suggestions for improvement based on your experience. 

What is your experience:

1. Calling for a clinic appointment

2. Waiting in the waiting room

3. Waiting in the exam room

4. Is the staff friendly, do they know who you are, do they know your special needs?

5. Are you given a long enough appointment time to address all of your goals and needs for the appointment?

6.  Is there any coordination between your primary provider and the specialists you see?

7. Do you have a care plan?

a.  Did you help develop the care plan?

b.  Does it contain information that is important to you such as preferences about your care and typical protocols in the event that you become sick? 

c.  Do you take the care plan with you when you see specialists or if you have to go to the emergency room or into the hospital?

8.  If you use a wheel chair or other mobility device:

a.  Are you able to easily get into the clinic?

b.  Once you are in the clinic are you able to easily get around in the clinic and in the exam room?

c.  Are you able to easily get onto the exam table?

d.  Are you able to access the bathroom in the clinic?

Here are some additional ideas for you to think about:

Patient Fact Sheet                                      

Five Steps to Safer Health Care, from the Agency for Healthcare Research and Quality (AHRQ): www.ahrq.gov/consumer/5steps.htm          

1. Ask questions if you have doubts or concerns. Ask questions and make sure you understand the answers. Choose a doctor you feel comfortable talking to. Take a relative or friend with you to help you ask questions and understand the answers.

2. Keep and bring a list of ALL the medicines you take. Give your doctor and pharmacist a list of all the medicines that you take, including non-prescription medicines. Tell them about any drug allergies you have. Ask about side effects and what to avoid while taking the medicine. Read the label when you get your medicine, including all warnings. Make sure your medicine is what the doctor ordered and know how to use it. Ask the pharmacist about your medicine if it looks different than you expected.

3. Get the results of any test or procedure. Ask when and how you will get the results of tests or procedures. Don't assume the results are fine if you do not get them when expected, be it in person, by phone, or by mail. Call your doctor and ask for your results. Ask what the results mean for your care.

4. Talk to your doctor about which hospital is best for your health needs. Ask your doctor about which hospital has the best care and results for your condition if you have more than one hospital to choose from. Be sure you understand the instructions you get about followup care when you leave the hospital.

5. Make sure you understand what will happen if you need surgery. Make sure you, your doctor, and your surgeon all agree on exactly what will be done during the operation. Ask your doctor, "Who will manage my care when I am in the hospital?" Ask your surgeon:

Exactly what will you be doing?
About how long will it take?
What will happen after the surgery?
How can I expect to feel during recovery?
Tell the surgeon, anesthesiologist, and nurses about any allergies, bad reaction to anesthesia, and any medications you are taking.

U.S. Department of Health and Human Services American Hospital Association American Medical Association AHRQ Publication No. 04-M005 Current as of February 2004

Be Involved in Your Child's Health Care, from the Agency for Healthcare Research and Quality: www.ahrq.gov/consumer/20tipkid.htm

1. The single most important way you can help to prevent errors is to be an active member of your child's health care team. That means taking part in every decision about your child's health care. Research shows that parents who are more involved with their child's care tend to get better results. Some specific tips, based on the latest scientific evidence about what works best, follow.

Medicines

2. Make sure that all of your child's doctors know about everything your child is taking and his or her weight. This includes prescription and over-the-counter medicines, and dietary supplements such as vitamins and herbs.

At least once a year, bring all of your child's medicines and supplements with you to the doctor. "Brown bagging" your child's medicines can help you and your doctor talk about them and find out if there are any problems. Knowing your child's medication history and weight can help your doctor keep your child's records up to date, which can help your child get better quality care.

3. Make sure your child's doctor knows about any allergies and how your child reacts to medicines. This can help you avoid getting a medicine that can harm your child.

4. When your child's doctor writes you a prescription, make sure you can read it.  If you can't read the doctor's handwriting, your pharmacist might not be able to either. Ask the doctor to use block letters to print the name of the drug.

5. When you pick up your child's medicine from the pharmacy, ask: Is this the medicine that my child's doctor prescribed?  A study by the Massachusetts College of Pharmacy and Allied Health Sciences found that 88 percent of medicine errors involved the wrong drug or the wrong dose.

6. Ask for information about your child's medicines in terms you can understand—both when the medicines are prescribed and when you receive them at the hospital or pharmacy.

What is the name of the medicine?
What is the medicine for?
Is the dose of this medicine appropriate for my child based on his or her weight?
How often is my child supposed to take it, and for how long?
What side effects are likely? What do I do if they occur?
Is this medicine safe for my child to take with other medicines or dietary supplements?
What food, drink, or activities should my child avoid while taking this medicine?
Is the dose of this medicine appropriate for my child based on his or her weight?
When should I see an improvement?

7. If you have any questions about the directions on your child's medicine labels, ask.  Medicine labels can be hard to understand. For example, ask if "four doses daily" means taking a dose every 6 hours around the clock or just during regular waking hours.

8. Ask your pharmacist for the best device to measure your child's liquid medicine. Also, ask questions if you're not sure how to use the device.  Research shows that many people do not understand the right way to measure liquid medicines. For example, many use household teaspoons, which often do not hold a true teaspoon of liquid. Special devices, like marked oral syringes, help people to measure the right dose. Being told how to use the devices helps even more.

9. Ask for written information about the side effects your child's medicine could cause. If you know what might happen, you will be better prepared if it does-or, if something unexpected happens instead. That way, you can report the problem right away and get help before it gets worse. A study found that written information about medicines can help people recognize problem side effects. If your child experiences side effects, alert the doctor and pharmacist right away.

Hospital Stays

10. If you have a choice, choose a hospital at which many children have the procedure or surgery your child needs. Research shows that patients tend to have better results when they are treated in hospitals that have a great deal of experience with their condition. Find out how many of the procedures have been performed at the hospital. While your child is in the hospital, make sure he or she is always wearing an identification bracelet.

11. If your child is in the hospital, ask all health care workers who have direct contact with your child whether they have washed their hands.  Handwashing is an important way to prevent the spread of infections in hospitals. Yet, it is not done regularly or thoroughly enough. A study found that when patients checked whether health care workers washed their hands, the workers washed their hands more often and used more soap.

12. When your child is being discharged from the hospital, ask his or her doctor to explain the treatment plan you will use at home.  This includes learning about your child's medicines and finding out when he or she can get back to regular activities. Research shows that at discharge time, doctors think people understand more than they really do about what they should or should not do when they return home.

Surgery

13. If your child is having surgery, make sure that you, your child's doctor, and the surgeon all agree and are clear on exactly what will be done.  Doing surgery at the wrong site (for example, operating on the left knee instead of the right) is rare—but even once is too often. The good news is that wrong-site surgery is 100 percent preventable. The American Academy of Orthopaedic Surgeons urges its members to sign their initials directly on the site to be operated on before the surgery.

Other Steps You Can Take

14. Speak up if you have questions or concerns. You have a right to question anyone who is involved with your child's care.

15. Make sure that you know who (such as your child's pediatrician) is in charge of his or her care. This is especially important if your child has many health problems or is in a hospital.

16. Make sure that all health professionals involved in your child's care have important health information about him or her.
Do not assume that everyone knows everything they need to. Don't be afraid to speak up.

17. Ask a family member or friend to be there with you and to be your advocate. Choose someone who can help get things done and speak up for you if you can't.

18. Ask why each test or procedure is being done. It is a good idea to find out why a test or treatment is needed and how it can help. Your child could be better off without it.

19. If your child has a test, ask when the results will be available. If you don't hear from the doctor or the lab, call to ask about the test results.

20. Learn about your child's condition and treatments by asking the doctor and nurse and by using other reliable sources. Ask your child's doctor if his or her treatment is based on the latest scientific evidence. For example, treatment recommendations based on the latest scientific evidence are available from the National Guideline Clearinghouse™ or other Web sites such as healthfinder® at www.healthfinder.gov.